1 Services for People of Minority Cultures -- Part I. Presenters: Lucy Wong Hernandez and Daniel W. Wong. >> LAUREL: Good afternoon. This is Laurel Richards with ILRU in Houston. Welcome to another webcast. Today's subject is on services for people of minority cultures. And it's Part I of a two part series. And I want to -- we'll get started, but I want just a couple of things to let you know regarding the technology of the webcast. Right now you're connected to the ILRU page that's for this webcast. You'll see a click for the information about the presenters, about the overview, about the PowerPoint presentation that will be used. You are connected by means of a Media Player, probably it's RealPlayer or it's Windows Media Player and you're hearing of course the audio and at the same time you're seeing in the captioning that's occurring of course in realtime. For those of you who don't need the captioning, you have the choice of minimizing it. 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Now, also you'll know at least on the RealPlayer, down at the bottom, there is a little link that you can click that says if you have questions click here. Probably oat Media Player of windows you probably have to do your E-mail yourself., but if you have a question during the presentation and our presenters would like to receive questions, just you know click on that -- on the button on the RealPlayer or write it in on the other one and just do ilru@ilru.org. >> DAWN: Or you can do webcast@ilru.org. >> LAUREL: If you have a question or comment, don't hesitate and just do that. We'll hold the questions -- it will come straight to us in the office and we'll hold the questions until they are asked for -- the question period is asked for. And Dawn Heinsohn is going to handle today's questions. 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So with that I want to introduce today's presentation. It's an important subject. Years ago ILRU was heavily involved in doing management training to executive directors of centers for independent living. A wonderful period for about five years we did that, and when people -- when we had selected the people to come and participate in the training, usually it would be about 12, we would do kind of a mini Delphi process and we would ask them, please identify your five most pressing management issues as a director of a Center for Independent Living? And always, always how to improve outreach to underserved populations was in the top ten if not the top five. Now this is as far back as 1985. It's always been a major issue for people who are working in and directing centers for independent living. So when we were asked by our friends mad on Kundu and Alo Dutta to collaborate with them and others to participate in a proposal to get funding from NIDRR, we were delighted to do that because we knew they would 4 do meaningful research and those of us who are online and working in the independent living field, we know meaningful research is the kind that we can take and use and make a difference in our day to day work. There is also meaningful research that has pay offs a bit later in the future, but you know we're living with day to day issues right now and we're practical people. That said, the project was funded. It's the rehabilitation research institute on under represented populations. We've noticed the term enology change a bit. Sometimes it's minority populations. Sometimes it's people who are culturally diverse groups. Sometimes it's underserved groups, and now we like under represented populations, but we know it's a population sometimes in which English is not the primary language. And so we're going to today have presentations by Daniel Wong and Lucy Wong Hernandez on this subject. Now, as you can see from their bio sketches on our website under "about the presenters" they both have execs tense I have experience in rehabilitation, advocacy, academic, social policy and service provision for people with disabilities and I invite you to look harder at their descriptions. It's very impressive. Lots of awards, lots of important work that they've done. And the focus, interestingly -- the focus of their work has been disabilities issues in this country but also internationally. So they bring to us a very broad background in which they will present today's message on -- we're calling it today services for people of minority cultures. Daniel and Lucy, you're very welcome -- and Daniel I believe you'll 5 start out on the presentation. >> DANIEL: Yes, Laurel. Thank you so much for an excellent introduction and as you mentioned that's a pressing issue actually since the '70's. You know, we'd like to thank all the partners at Southern University, the University of Memphis, together we work on this project and some of the partners are at the University of Wisconsin in Madison and engaging in different research activities and we as a partner, we feel very privileged to have the opportunity to work with all partners. Last year, we made a presentation on cultural diversity with respect to Hispanic and Asian Americans and we had a wonderful time. And for this presentation since the topic to be discussed is a very, very huge topic, so we will try to use two webcasts to discuss this topic. But in reality, every presentation or every research study to be conducted or to be written as an article is like a building block to study this topic further and we believe that in our lifetime we are the students of cultures and this is a life-long learning process for us as well. So, anyway, the past year, the challenge of a paradigm shift for rehabilitation for the human service professionals until cultural society in the U.S. demands a better understanding and implementation of how are the disciplines in the human service field adapting to the challenge presented by the people they serve and the people they work with. So this presentation -- if you have the chance to download the PowerPoint in our slide No. 2, we cannot conceptualize the philosophical concept of this presentation to require a wider understanding that will 6 advance the rehabilitation process, and taking into account the significant importance of cultural factors in enhancing the quality of life of persons with chronic illnesses and disabilities. Now, there are a total of two goals and three objectives. Our goal No. 1 is to discuss issues related to chronic illnesses, disabilities and secondary conditions and the culturally diverse family and how they impact the rehabilitation process of the consumers. And No. 2 is to highlight the challenge presented by a paradigm shift for future rehabilitation and family services application in a culturally diverse society that demands us to better understand and implement how rehabilitation and other disciplines in the human service field will adapt to the multiple issues presented by the consumers and families they serve. Now, in our slide No. 4, there are a total of three objectives. The first one is this presentation will provide an understanding of how cultural factors play a significant role within families who have members with significant physical and mental health related issues such as chronic illnesses, disabilities and secondary disables conditions. And No. 2 is to discuss the significance of how cultural factors will contribute to the coping, adjusting, caring and managing of family members who acquired chronic illnesses, disabilities and secondary disabling conditions. And as a vital importance, when assisting and providing rehabilitation services as an intervention. And last, but not the least, No. 3 is a summary of cultural competency skills recommendations for working with consumers and their families from diverse cultural and ethnic backgrounds will be presented in our second 7 webcast in a couple of weeks. Now, let me provide you with a brief introduction which is on slide No. 5. The introduction is critically important to understand how cultural factors play a faint role within families who have members with significant physical and mental health related issues such as illnesses, disabilities and secondary disabling conditions. One important thing that we have to remember that the American culturally diverse population deserves to receive services that match their culturally based life situations when dealing with chronic illnesses, disabilities and secondary disabling conditions. Now, if you have access to the slide No. 6, we have this graph to kind of identify the two important things that we kind of believe that they are the most important things called quality of life and the prevention of secondary conditions, which is the ultimate objective for achieving so-called rehabilitation outcomes. Now, let's look at the graph. Okay, we have rehabilitation main goals that identifies two major practices that I put it down as prevention of secondary conditions and improving quality of life. Now, there is a total of five so-called contributors. Of course there are so many contributors of people start looking into the so-called rehabilitation main goals. So we kind of identify the five most important ones. The first one as you can see on your left-hand side is the medical interventions. The second one is the psychosocial interventions. The third one is the consumer involvement. The fourth one is community support and the fifth one is the family interventions. 8 Now, those five contributors as we see it are probably the most important factors contributing to so-called the main goals of rehabilitation which are the prevention of secondary conditions and improve quality of life. So if you want to design medical intervention or medical rehabilitation as we know, that medical rehabilitation helps people with physical disabilities to trauma or to achieve greater independence or some may say medical rehabilitation focuses on prevention, diagnosis and treatment of disabilities to help individuals live with greater independence. The second one psychosocial intervention basically encourages a person to participate actively with others in the attainment of mental health and social competence and the process emphasizes the wholeness and wellness of the individual and seeks a comprehensive approach to the provision of vocational, residential, social, recreational, education and personal adjustment services. If you look at the third one, when we talk about consumer involvement -- consumer has to be educated or they have to be educated themselves regarding their condition and they have to be an advocate for their course of understanding their illness and their conditions. And they also have to be active in engaging in the whole rehabilitation process. The fourth one, family intervention -- as we all know, family is the core of every activity we engage in our life. Family support and intervention is one of the most important components of the rehabilitation process. So we need the family support. We need the family member to 9 provide us with psychological and emotional support during the process. The fifth one is community support. The positive attitude of the community is very important as we know. When a person acquires disability, the community has to provide full access to educational and medical support to the individual. And the other important thing regarding community support is recreational facilities, they have to be accessible and the community should have a positive attitude toward people with disabilities. Now, let's look at the data after we kind of defined these so-called five major contributors to so-called rehabilitation main goals which are quality of life of and the prevention of secondary conditions. As we know there have been sizable goals in the proportion of multicultural populations living in the U.S. from 1980 to 2000. Of course we have later figures that is even more alarming that an estimated one in ten Americans was born outside the U.S. and even larger proportion of culturally diverse population is projected for the year 2010. The constantly changing of the demographic and cultural configuration of the U.S. has alerted us, the human and social service professional of the needs to provide specific services to individuals from diverse cultural and ethnic backgrounds. This specific service should be offered in different ways according to the requirements imposed by cultures that we'll describe later. Now, recent legislation in an effort to have a more equitable society mandates practices relevant to the health and mental health and therapeutic and counseling practices, rehabilitation counseling, independent living services and employment needs of persons with disabilities from diverse 10 cultural and ethnic backgrounds to be culturally sensitive. So understanding sociocultural model of persons with chronic illnesses and dill disabilities is of most importance and kind of a major interest of the academic and scholar professionals. We know that unless programs and services for individuals with chronic illnesses and disabilities are decided in a culturally appropriate way, the opportunity to make real and effective changes is often lost and not accomplishable. Cultural variable affecting diverse populations such as values and beliefs, family structures and attitude toward illnesses and attitude toward disabilities are critically important to the outcome of services being provided. The intent of providing services is not to gather up every known human variation. That's impossible, but rather to alert the practitioner or professionals to the fact of the way in which chronic illnesses and disabilities and secondary conditions will have an impact on the manner in which professional and therapeutic services are received, regarded and able to serve the consumers and clients effectively. Human service professionals have to recognize that individual and culturally diverse people is important in any therapeutic interventions in counseling, family therapy, psychotherapy and rehabilitation services. It has been for years now indicated by many researchers and scholars and even the service providers in the future the motive for working with and knowing -- knowing different ethnic groups will not be just politically liberalism or just obligations, rather the motive will be igniting 11 self-interest and the wish and need to perform our work ethically and professionally and of course ultimately enjoy our work. The society has become increasingly multicultural or multiethnic and the self-interests of all would be served by the skill and competency needed when working with culturally diverse populations. For human service professionals, the test is to better understand culturally diverse groups, to form behaviors that are applicable to diverse groups and to promote wellness of all human being through education, teaching and psychological interventions. This test that I mention is neither simple or new, but there is a special sense of importance of now addressing them because of fast demographic populations changes and the continuing difference for health and mental health inequity and well-being among diverse groups in our American society. As I reiterate that, we believe two major important importance of rehabilitation goals is the prevention of secondary conditions and improving quality of life. We will explain further in a few minutes. Now we also understand the so-called you want to say quality of life or identifying variables that may contribute to quality of life is like squeezing a (inaudible) into a Volkswagen. And also we know that very well research on quality of life remains to be a big challenge to many researchers and professionals. So at this point, I'd like to pass the presentation to Lucy and have her continue. >> LUCY: Thank you, Daniel. Thank you for all this great 12 information. As you can see, I mean the explanation that Daniel has given us to get us thinking about the rest of the presentation is very, very comprehensive. And I want to touch on the fact -- on the issues that are more related to a couple of definitions related to chronic illnesses, secondary conditions and of course how culture also has a major role in -- when we provide the services and in the life of the consumer, of course, and the family. I'd like to start by -- for example, mentioning that there are countless conflicts that occur in the human service delivery arenas, such as in health care and rehabilitation services based on cultural misunderstanding. And that's what we're referring to. Cultural conflicts are situations when the provider may encounter situations where the client, consumer or family does not adhere to the suggested plan or intervention or where other variances happen and they were not expected. For example, consumers and family behaviors that occur that are based on the consumer and family's ethnocultural heritage which are not understood by the service provider. Many of these cultural conflicts are related to universal situations such as verbal and nonverbal language and communication misunderstandings, the expression of courtesy and appreciation that we expect from the service provider and the service provider from the consumer or client. Also the secrecy of interactions. How often do you interact with a particular consumer or family. The facing of interactions, you know, how many times and what level of interaction, objectivity and so forth, many, many different variables. 13 There are, however, countless cultural misunderstanding unique to the delivery of rehabilitation services. The necessity for professionals to provide culturally-based services that are culturally sensitive, culturally appropriate, and culturally competent is essential. And this demands that providers must be able to assess and interpret the given client, consumer and family needs and services, beliefs and practices. This is what is called nowadays the model of culturally-based services and of course for many individuals this sort of like comes like new into your profession and it alters the perspectives of service delivery as it enables the provider to understand from a cultural perspective the manifestations of the consumer's beliefs, expectations and practices. So I'd like to start talking about a couple of definitions. For example, when we talk about culture, we talk about diverse populations. We need to take a look at what is culture. There are so many different ways to define it and I'm sure you've heard many of them. And what I did was I tried to simplify it in the interest of time and a simple way for understanding the definition of culture -- you see that in slide No. 9 -- culture can be construed as the set of rules, shared belief systems, attitudes and norms that promote stability and harmony within a social group. Also culture regulates and organizes what a group feels, perceives, thinks or does, but may be expressed individually in a variety of ways. This is important for providing and receiving services. It has a very significant impact on the delivery of the services and on the intervention that is being provided, how the consumer may perceive that. 14 Looking at slide No. 10, when understanding culture, we have a few variables that include, for example, the familial roles and functions, who makes the decisions, how decisions are made within a given family, reasons of social and interpersonal communication, how this communication is being interpreted by both service provider and the consumer. Affective styles and perception, understanding what is going on, values and ideals, spirituality and religion, habits of communication with other cultures, artistic expressions and customs -- all of these are very important because somehow they come and interplay in the relationship between service provider and the client/consumer. Also rituals and celebrations, very important to have at least some basic knowledge about these issues when you work with a given population. For example, when setting meetings and appointments, you need to take into consideration whether a holiday that is coming up or a religious celebration may interfere with that date or appointment and sometimes consumers may be a little bit shy about saying, I'm sorry, I can't come to that appointment because it's a holiday for my family or my culture, and they just miss the appointment. So that creates a misinterpretation or a conflict again between the cultures. Geographical and historical location is also very important. For example, any given culture group that lives, say, on the west coast may behave in a different way than a group on the east coast because of a lot of environmental issues and people usually try to settle and get used to whatever is going on in their community, east and west as we know may have some differences in the social interaction and so on. 15 Looking at slide No. 11, we need to understand the culturally diverse family because as Daniel mentioned before, the family plays a major role not only in the decision-making, but also in providing the necessary support for the success of the rehabilitation outcome or the independent living services that are being provided or even health care provided. Despite the fact that cultural influences are on every fabric of society, they are often unrecognized or unappreciated. This is a fact. These factors are often at the root of much emotional conflict between individuals and including among different professional fields. The culturally diverse family is deeply rooted in the fabric of society and service provision needs to take this into account. It's one of those things that we can no longer avoid. We have to face that reality. And to add to that challenge that we already have, we also have the fact that some families also offer the unique aspect of being multicultural within the same family system. So that really adds a very unique aspect of dealing with multicultural families. It is important to also understand the meaning of ethnicity. Ethnic identity refers to people who share a common nationality, culture, language and religious beliefs. An individual's sense of self as a member of an ethnic group and the cultural attitudes and behaviors associated with that sense are very important to the uniqueness of the individual and/or the family. Therefore, we can say that culture is a set of distinctive behaviors, values, beliefs and products that is expressive of a certain ethnical group and nationality. 16 Research has examined several factors that can lead to the neglect of cultural variables. They include lack of contact and experience with other cultures, the need to simplify rather than complicate perceptions within a cultural context, fears which lead to stereotyping others because of cultural background, ethnocentric biases and equating diversity with (inaudible). Daniel mentioned before that we don't intend to put everyone in a catalog, but rather than to try to find a lot of the similarities that the different cultures may bring to the table when dealing with that service provision. Now, let's look at chronic illnesses. This is on slide No. 12. There are two types of illnesses -- acute and chronic. Acute illnesses, depending on its severity, like a cold or influence, for instance, are usually over relatively quickly and we're happy about that. Chronic illnesses are long lasting health conditions that may have consequences of secondary conditions that are related to the primary chronic condition, such as, for example, diabetes and limb amputations. Individuals living with a long lasting health condition which is also called chronic illnesses encounter many challenges. These challenges health-related issues including secondary conditions that confront the individual. Family members and service providers, caregivers coping with this challenge -- it becomes sometimes sort of like a complicated task. Negative attitudes prevent full participation in community, service and integration into society and negative impact on economic situations due to loss of wages, for instance, and possible employability of the individual. 17 In slide No. 13, let's talk about chronic illnesses a little bit more. Having a chronic illness or a condition does not necessarily mean an illness is critical or dangerous. As we know, some chronic illnesses such as cancer, for instance, or AIDS can be life threatening, but chronic illnesses can also include conditions like asthma, arthritis, cardiovascular diseases and diabetes that are medically managed. We tend to manage those pretty good with the medical health care support. In most cases, chronic conditions become permanent disabling conditions and that's when things begin to become a little bit more complicated. Although the symptoms of a chronic illness might go away or go into remission with proper medical care, usually a person will continue to have the underlying condition even though their medical treatment means they may feel completely healthy and well most of the time. Now, most recently there has been a lot of attention given to the study and prevention of secondary conditions, and that's why we decided to include it in this presentation. They, too, affect multicultural consumers and of course multicultural families. On slide No. 14, I have a simple definition for secondary conditions which are those health conditions not present at birth; but that occur later on as a result of the primary disability condition and usually are more susceptible by virtue of the primary condition. They are medical, physical, cognitive, emotional and psychological consequences to which persons with disabilities are more susceptible to, as I mentioned before, just to give a few more examples, for example, I mentioned diabetes may cause limb amputation. It is believed that it also 18 causes obesity which is one of the things that our society now talks so much about. For an individual that may have a spinal cord injury, osteoporosis is one of those secondary conditions that are being examined very closely now. And of course as long as there is chronic illness or perhaps a secondary condition that is taking place, we may expect depression or issues related to mental health could also be present as a secondary condition. These secondary conditions present a number of adverse outcomes. For example, if you look at slide No. 15, we can see that health -- health that is so important because of the complication that is may arise. We also have wellness which has to do with healthy living and prevention and in particular prevention of the secondary conditions. Family and community participation of course is also one of those adverse outcomes because the family and the consumer may feel isolated from society and even from the activities of the family in many cases. And of course quality of life, which is one of our main topics also that we emphasize a lot. Quality of life because at the lack of social inclusion and social participation, it affects our quality of life. There are so more important issues to cover, but now let's look at slide No. 16, which is a little bit more extended in reference to the implications of the secondary conditions. For example, in the review of literature in our experiences in secondary conditions add new dimensions not fully captured by the medical model definition. Remember when we used to talk about medical models versus social models, right, for independent living, for provision of services. So at that time no medical events such 19 as social isolation and environmental barriers were considered. These issues were not part of all these medical models that used to be very prominent years ago. Conditions that affect the general population such as obesity and diabetes, that I mentioned before, but which more greatly affect people with disabling conditions were not looked at as a major issue with significant impact. Problems that arise during the lifespan, like inaccessible preventive medical screening among many other procedures. Lack of access and affordability to therapeutic services, rehabilitation services, among many others. The serious impact of these issues on diverse populations have prompted the Centers for Disease Control and Prevention, the CDC, to set a national agenda of one of the goals of Healthy People 2000. Some of you may be familiar with that, and this was to eliminate well documented health disparities and differences that occur among segments of the population including gender, sexual orientation, race, culture and ethnic background, education, socioeconomic status, environmental risks, and geographic location. In addition, all of these variables play an important role on how secondary conditions are prevents, diagnosed and managed. Looking at slide No. 17, if we look at the prevalence based on national studies, we find that research indicates that over 87 percent of the population with disabilities report having at least one secondary condition. Research participants also reported to experience different 20 types of secondary conditions in the period of 12 months as a result of the primary disability. So all of this is very important to keep it in mind for service provision. Looking at slide No. 18, common secondary conditions caused by chronic illnesses or acquired disabilities are, for example, chronic pain in muscles and joints; sleep disorder; extreme fatigue; weight and diet problems; muscle spasms or spasticity; respiratory infections; skin problems; renal problems and many more. I mentioned before mental health. Now if you look at slide No. 19, I have some information in how this applies to mental health as a secondary condition. For example, psychological issues such as periods of depression, episodes of anxiety, feelings of isolation, psychosocial isolation and behavioral problems. All of these are culturally expressed in many different ways. People have different ways of coping with all these issues of secondary conditions and in particular mental health issues that for many cultures is something that is not a topic that they would discuss very openly. Slide No. 20 talks about some risk factors for acquiring secondary conditions. For example, they depend on the type and severity of the primary disability. Lack of health maintenance for some people due to the lack of health insurance. We know that that is one of the major problems that we find when we talk to families from diverse cultural backgrounds. Another is poor health status because of the lack of the same health maintenance this they may need.pair education and income are two important risk factors here on being able to access the health care, the 21 rehabilitation services or any type of human services. Activity limitations, of course, is one very those risks that affects and has a lot to do with the mental health issues that I mentioned before. Age and injuries of course are very important in risks. Age relates to the onset of the chronic condition or the disability and also later on in life the secondary conditions. And injuries -- perhaps a lot of injuries based on information from research that usually happen right at home. So the type of injuries also, you know, are a risk factor. In slide No. 21, we talk about the challenges contributed by secondary conditions and these are very serious and of course many of them. For example, disability-related complications that further limit a person's ability to full rehabilitation, which is so important, and when we say rehabilitation we include medical, vocational and psychosocial. Participation in activities of daily living -- if this is not taking place, we know that the quality of life of the individual and the entire family is definitely affected. Interpersonal relationships -- this becomes you know one of those barriers that people need to try to overcome. And education and employment -- because as you will see later on as we continue explaining -- become interrupted because of all these situations. So it is important to understand and prevent the chronic illnesses, disabilities and secondary conditions because they interfere with the service delivery and the rehabilitation of the individual and the quality of life of the individual and the family. Looking at slide No. 22, the challenges. It is important to note that 22 some secondary conditions are preventable. Some are part of the course of the primary disability, not preventable, but they are manageable. They are associated with a higher risk of poor health, psychological setbacks and many other challenges. They disrupt school and employment experiences important for service providers to understand when this is taking place, and a greater number of days the individual may be unable to perform routine activities. So after discussing the chronic illnesses, disabilities, culture and the secondary conditions, I think that the question that we all have in mind is how do we provide services to a diverse population of consumers and their families? And Daniel will now expand this a little bit more. >> DANIEL: Thanks, Lucy. It's very extensive and very comprehensive topic that we tried to squeeze in a couple of presentations, but let's talk about family, culture and disabilities. I think it's on slide No. 23. Cultural differences and the so-called role of parents and family in the lives of people with disabilities are very important. But for example the common belief that western culture adopts definitions of disability established by our legal or professional institutions. And other cultures may define disability differently. Now, this has been widely documented and widely written on this topic that definitions may be determined by religious and historical and cultural beliefs. And so when we try to defined it, we have to take all this in consideration and I believe at this moment we still have many, many people trying to define so-called disabilities. 23 Now, with respect to impact on the family, on slide No. 24, disability impacts the entire immediate family, economically and psychologically. Now, economically of course we talk about income earning, the money that someone has to earn to support a family, and psychologically that we have to consider that any kind of disruption in a family that someone acquires a disability or any kind of disabling condition that it may cause stress and some hardship, of course, because the income will be depleted if someone cannot continue working. And family roles may shift due to the onset of disabilities. Now, if one of the parents becomes so-called disabled, the other parent or other family members have to share more responsibilities with respect to our income or share the house chore activities, and picking up other responsibilities as it goes along. Now, family must often adjust to greater isolation which people working in the field understand. Limited family and social activities due to the care they need to provide to the family member which is sometimes takes the time and hopefully the program is set up to provide respite services to the family that they can have more interaction if it's necessary and it's possible that assistants need to be provided to the person with disabilities to be more actively involved in social activities. Number four, the increased responsibility on siblings -- sometimes of course sisters and brothers may have to pick up, you know, the responsibilities of the other person that cannot perform in the family, but on the contrary, the sibling may feel neglected by the parent because the parents pay too much attention to the one that so-called needs attention or 24 the person that's acquired disabilities. Number five, family members may feel a loss of physical and emotional support. Definitely in most cases that's brutally true because that happens all the time, especially from other family members which don't understand the conditions or the situation of the family members. Lucy mentioned the medical model and the social model a few minutes ago and let's look at slide No. 25. There we have this model that in addition to the medical model and cultural models the so-called cultural-based models has been written in different publications. So let's discuss this so-called medical model versus cultural based model. Now, the assumptions are disabilities is a physical condition and maybe you can control it or alleviate it or somehow medically control it. But from the cultural-based model standpoint, disability is a spiritual condition. It's beyond your control. It's something that perhaps cannot be cured. And two, from the medical model standpoint, disability is an individual condition. It's just a person who acquired a disability that has to deal with it and to live with it or to somehow take care of it. But then from the cultural-based model Standpoint disability is a group condition. Your family or others should share your experience and your burdens. Number three, disability is a chronic illness from the medical model standpoint. Somehow there are different definitions. Some people believe that if someone acquires a disability, it is mentioned that the person -- she or she has been forever labeled as someone with a disability, but from 25 a cultural-based model, disability is a time-limited condition. Now, some people may ask what is this so-called time-limited condition. There are different definitions, but I believe that in some cultures perhaps people may accept your condition in the long run. So that it doesn't matter to them anymore. This is part of you. No. four, disability requires a cure of fixing in the medical model. And the medical model is to fix or to cure or to get well. That's the medical model. But then from the cultural-based model, disability must be accepted because it's beyond your control and it's part of the process as a human being. Now, if you look at slide No. 26, in many cultures and also in many countries, disability is perceived as a spiritual condition. In some cultures, disability is perceived as a punishment for so-called past wrongdoings and personally since I'm Asian Chinese I can tell you it's very common in the Asian and perhaps even in the Hispanic culture that the family member always feel or the parents always feel that perhaps somebody has done something or they have done something and so that's why the children acquire disabilities. And secondly, disability is a condition to test your endurance. We can look at it this way: Something that perhaps you have to go through because God gave it to you and so you have to -- God has to test your endurance in terms of coping or dealing with this condition. And number four, a child with a disability is a gift from God. Then some people may say, well, perhaps because I'm such a dedicated person and religious person, you know, I can handle this. And number five -- number 26 four, a child with a disability is an ancestor who has come back to the family. I heard that often when I was growing up in Asia that for the family to care for that person with disabilities, it's something that perhaps your ancestors and he or she related to your family -- so anyway, a lot of those interesting beliefs which we perceive as spiritual conditions. Now, let's look at slide No. 27, the so-called cultural perspectives of chronic illnesses, disabilities and secondary conditions. Different cultures may have different perceptions understanding expectation and mode of treatment of chronic illnesses, disabilities and including secondary conditions. Now, diverse cultural groups may have cultural opinions and expectations of professionals in the medical field of mental health and rehabilitation services. One aspect that is constant for all cultures and ethnic groups is this universal perspective that good health or health, healthy living is an interest of all cultures. However, the ways in which various cultures deal with and cope and adjust to chronic illnesses has distinctive variations. It may be said that acceptance and perception of disabilities is culturally determined. Forced to identify how cultures perceive (inaudible) the human service provider like counselors and psychologists, family therapists can also identify specific skills, health seeking behaviours from individuals in diverse ethnic backgrounds. Now, a recent study did point out the degree of acceptance of chronic illnesses and disabilities may influence an individual and his or her family member on how they function as a unit in order to cope with this situation. 27 A challenge for human services and rehabilitation counseling is that it's almost impossible to understand the meaning of behavior unless one knows the cultural values of a client or consumer or the family receiving the services. Even so-called the definition of family differs greatly from group to group and also from culture to culture. So we always believe as an example the so-called dominant Anglo definition focuses on the family and in other cultures there is no such thing as the nuclear family. Three or four generations of families which also includes Godparents or extended families as in the case of some cultures such as Italians and Hispanics, Latinos among many others. Some American families focus on even wider network -- I'm talking about the African Americans -- of community of all equally important to the meaning of family and so-called family network. Asian families include all ancestors tracing back to the beginning of time. So you may be talking about 4 to 5,000 years and all decedents or at least male ancestors and descendants reflect a sense of time or have an ethnic -- we only have a little bit more than 200 years as compared to China and now you're talking about thousands and thousands of years for history. This is an important cultural characteristics that needs to be clearly understood when we ask or try to identify who is the family or other family members roles who make decisions and take responsibilities. The following factors may help in identifying by other scholars or researchers to be associated with the perception and coping mechanism of chronic illnesses and disabilities among people from diverse cultural and 28 ethnic backgrounds. As an example of two cultural groups that are rapidly increasing among the fabric of the American society are Hispanic or Latino we find specific characteristics that demand our attention as service providers. We mention that because as some of you may know that we both come from Hispanic and Latino and Asian as our cultures. Now, as a professor teaching in rehabilitation counseling or rehabilitation service field for many years, I have been asked by many of my students that when counselors often receive -- from the consumer that the family member would like to accompany the consumer to the meetings, to the visits, that is a very difficult situation for them to allow them, the family member, to come to the meeting because for the counselor they are perceive this as not necessary, but in some cultures it's important for the family to understand the situation and perhaps to advocate for their family members, but that's a very complicated issue to address and you know I always suggest that we have to look at this situation case by case in determining how you allow this kind of so-called family member to participate in a service delivery system. Let me pass it to Lucy to define more disability and other issues. Lucy... >> LUCY: Thank you. The subject that Daniel was just giving when a consumer comes to a meeting or a consultation with more than one family member as a companion is one of those characteristics that, for example, happens a lot among the Hispanic culture. We tend to, of course, always have an adult or older family member or very, very close friend to 29 give us the support and guidance that we may need when making decisions or affecting decisions others might be trying to make for us. So this is a regular thing and it's true, students always ask about that and also practitioners say I have this client, very small space to meet with the client, but he or she has at least three companions. What should I do? Who should I say should come into the room or who should stay out? Very difficult decision to make. And we need to be able to understand that all members of that group at that moment are important, important to the consumer, and most important to the outcome of that meeting and if plan that is to be followed because when they go home, they will consult with each other and somebody probably with a more leadership position within the family will make the final suggestion. So that's important to take into account, especially when it refers to the Hispanic population. Let's look at slide No. 28 since we are pressing for time over here. This is about disability as a group condition, which is more how the different cultures interpret the condition rather than just the nuclear family, but it's more like the entire family and those extended family members look at it. Everyone, as we know, will become old and acquire a disability some day in life. The person is not solely responsible for its occurrence. And family members share responsibility for the occurrence of the disability. And this is show most cultural groups that we have studied and work with them in their countries or even here in our country, how they see it, how they express it. It's not an individual situation, but it's more like a group situation or a group condition. 30 Another example that I wanted to share also based on what Daniel was referring to, for example, men, especially Hispanic and also Asians have been culturally taught that it is their responsibility to provide for their family and being strong is considered and important male attribute. Acceptance of a chronic illness and disability may, therefore, be more difficult for them than for other consumers, females, for instance, clients or patients who perceive this role, you know, a little bit less stringent. So for some cultures it's not really all that important. For other cultures, you know, it's very important, especially when the male or the father or the male role or the individual in the family is the one who acquired the disability. Women have their culturally designate roles within the family as we know. In most cultures, the woman is the caregiver, the protective force and the administrator of family affairs as well as the an correspond for stability among family members. In particular, during times of crisis and disability onset. In today's society the role of women, women from diverse cultures I'm including, has changed significantly and these changes also impact all women from diverse cultures as it does on issues of working outside the home to contribute to the financial household while still holding all her other prescribed responsibilities as daughter, wife, mother, sister and friend. In reference to an increasing diverse American society as we began our presentation, we have the issue of migration of families or family members who mig great to this country. And this is so disruptive that it may seem 31 to add an entire extra stage to the life cycle of those who must negotiate it, especially when settling in new communities. Adjusting to a new cultural environment is not a single event, but rather a prolonged development process that affects family members differently, depending on their life cycle phase that they are in when they are going through this process. So this is why it's so important whether we're talking about families that have newly come into our country or families that are from diverse cultural backgrounds but have been living in this country for many years. Acquiring and managing a chronic illness, a disability, a secondary condition makes life events more challenging for the individual, the family and the service provider and this is why all this information is so important. So I'm going to pass it on to Daniel because I think we may be running a little bit out of time and we would like to see if there are any questions or not. If not, send them in and we will answer them the next time. Daniel... >> DANIEL: Yes, so we'll continue our discussions on November 2nd and in the meantime we'd like to find out if there are any questions coming from the audience or people participating in this webcast? As Lucy mentioned that if you have any questions, you can send them to us or send it to Laurel or the other people working in ILRU. So at this point I'd like to defer it back to ILRU and Laurel and see whether you have any comments. >> LAUREL: Daniel and Lucy, thank you. Dawn, did we receive any questions that we could pose? 32 >> DAWN: We've gotten three. I can read them. The first one is how can families who have family members with chronic illnesses and/or disabilities assist them to prevent secondary conditions? >> DANIEL: Lucy, you want to answer that? >> LUCY: Okay, interesting. I always suggest that -- I mean getting as much information as possible and educating ourselves as much as possible on what is going on in reference to chronic illnesses and secondary conditions is so vital and so important. In order to do that, I mean we have to assess ourselves of other resources in the community. In particular, you know, anything that may be related to how can we access effective health maintenance and also learn the different techniques on how to prevent those second der conditions or try to manage the chronic illnesses. I think this is very important and the reason for that as we mentioned before is because it affects the entire family and not just the consumer and most important it affects, you know, the service delivery in one way or another. So that's what it is -- information and education as much as possible in order to be able to access health care and to prevent those complicated situations that take place. >> DANIEL: I'd like to add something in addition to Lucy's comment. For example, information dissemination, not just -- just disseminating information to anybody. We have to be culturally sensitive, like perhaps for the purpose of reaching out to other cultures, maybe we should, by law or by obligation, we have translations from different health care agencies, rehabilitative service agencies and also make sure that the 33 information to be disseminated is user friendly, that people can understand because people from diverse cultures -- that one of the issues that creates so-called health disparity is the people from so-called minorities or now underrepresented populations, that they have a problem of getting information and getting accurate information. So that's one thing that I think is very important to narrow the gap of so-called disparity by providing good information to people from diverse cultures. >> DAWN: Question No. 2: What are the consequences regarding the impact of secondary conditions in rehabilitation outcomes? >> LUCY: Okay, I'll try that. I think that we mentioned the different ways that this affects in particular for the service delivery. We mentioned the interruption of services. In some cases that I've seen, for example, when the person is almost completing a given training or education and so on, the onset of a secondary condition may take place and therefore sort of like making things very frustrating because everything is interrupted. In issues of employment, after going through an educational process and training and through vocational rehab, then we finally are able to place the individual at a given employment and if something like that takes place again, you know, once again that's another challenge, another big barrier because the person may need to take some time off and this interruption once again sets in and in many cases has some negative consequences related to mental health and so on. Because when you thought that everything was taken care, then suddenly another challenge, you know, to make life even more interesting. So interruption of services and 34 education and training I would think is one of those impacts that affects people and of course the service provider. Do you have anything to add to that, Daniel? >> DANIEL: Yes, I think that if someone was looking to the difference or the primary condition and the secondary condition, personally I believe that in terms of so-called gainful employment, the impact of secondary conditions probably -- probably have much bigger role to play with respect to the outcome because sometimes we believe that after a person's physical condition has been stabilized, in most cases the person is fit to go back to work, but other secondary conditions that Lucy mentioned in the presentation, if someone that acquires secondary conditions such as even loss of sleep or chronic pain and that probably will affect the so called rehabilitation outcome. So it's something that we have to look in to further and also make sure that prevention is the most important thing that we have to concern about. Thank you. >> DAWN: Are you ready for the third question? >> DANIEL: Yes. >> DAWN: Okay, how can we, rehabilitation professionals and educators, improve our knowledge in reference to becoming more aware about the cultural implications for effective service delivery? >> DANIEL: Thanks, Dawn. Personally, I truly believe that this is -- as I mentioned earlier, that we are still students of culture and, you know, in the years to come and I think we all have to make sure that we continue to learn, to have an open mind, to understand other cultures and to make sure that you have the opportunity to interact with the so-called 35 interacting with people from different cultures and really that you be sensitive to other people's needs and also as I mentioned to have an open mind to learn and to understand and of course to continue to obtain different kinds of training and to read more and perhaps to travel more. >> LUCY: Also I think that effective communication, for example, when talking to our consumers and their families, having a clear communication both ways and paying attention what is being said and the behaviors and so on. We could learn a lot about the different cultures. It's very important to be an effective communicator as a service provider I think that this will really enhance our knowledge and education and make us a more effective in the delivery of services. The interaction, if we only limit this cultural interaction to the office work, to the agency, the organization or the classroom, it's rather limited. I think that we need to pay attention what goes on around us and try to get as much information as possible of any cultural implication that we may need to know in order to be better service providers. And I think that this is, for example, this webcast is a great opportunity that people have from their own offices or homes to be able to connect and dedicate this time to listen to what different people from different backgrounds, from different professions have to say. So that all contributes to our overall enhancement of our knowledge. >> LAUREL: Boy, that's a marvelous conclusion to this whole discussion of how to learn more about other cultures. I like Daniel's idea of travel, too, Daniel. We'll have to work that. >> DANIEL: Thank you, Laurel. 36 >> LAUREL: It's a hugely important subject and as you know this is just part 1 of part 2. Next month -- I guess it is next month -- November you all will be doing the presentation on the second half. That day is -- am I correct -- it's November 2. >> DANIEL: Right, that's correct. >> LAUREL: So it's in like two weeks I guess, three weeks, anyway, it's November 2. And as we suggested before, those of you in the audience who have questions or care to make comments, please send those in to us here at the webcast at ILRU or if you wish, to Daniel and Lucy directly. We'll post the responses on this page and when you come back next time you can see the responses on November 2 when you come back and we'll cover all those bases at one time. Before I go into a wrap, Dawn, I believe we got all the questions? >> DAWN: Yes, ma'am. That was it. >> LAUREL: Lucy and Daniel, did we cover the topics until next time? >> DANIEL: That's correct. Yeah, we will continue to discuss and get into more detail discussion regarding this topic and as I mentioned it's a huge topic, but we'll try to utilize the time effectively and I mentioned earlier that it's just like -- this topic may perhaps need 10,000 presentations, 10,000 goals and we're just a little drop of water in a big bucket and it's like a building block with respect to the knowledge base of this topic. I'd like to thank Laurel and Dawn and Dr. Searle and all the people at ILRU for a very enjoyable discussion and presentation. >> LAUREL: On behalf of all of us, I say thank you. And I 37 always love to hear something nice about ILRU. So it's certainly my whole week has just been made, but thank you. And I'd like to touch base on a couple of things in addition to asking you to send in questions or comments, we also have on the web page and evaluation link. And that's just real important to us. We would like feedback from you, not just on the presentation, but also on issues such as the delivery of webcasts, the navigation, the ease of use, as well as additional topics would you like to see addressed. We'd like to hear ways we can improve the entire process. I also want to let you know that this presentation was part of the Rehabilitation Research Institute on Underrepresented Populations which Madan Kundu and Alo Dutta run out of Southern University that's in Baton Rouge. It's one of our historically black universities in the nation. They do excellent work in this area. The primary grant sponsoring the research institute is from NIDRR, National Institute on Disability and Rehabilitation Research. And we're pleased that NIDRR has taken initiatives to underwrite projects such as this and aspects of projects to promote the use of research information among those of us who are not researchers. And as you can see, Daniel and Lucy made this presentation of difficult concepts and research findings and even people like me can just about pick up what you're talking about, Daniel. >> LUCY: There is more for the next session. And a lot of good suggestions. >> LAUREL: We'll pay attention then, too. But thanks to NIDRR 38 for this emphasis. It's extremely important. We'd like to see more of the research funding through NIDRR for the researchers to present or to write or to other ways disseminate information of research findings to those of us who could probably put it to use right away or in the near future. Support for this webcast is also under -- well, it's handled by the personnel with which we -- I guess you could say we manage the project. We could not do it without the assistance from Baylor College of Medicine, the technology with which the lines are fed in there, one from the telephone lines and one from the captioner lines and it's a complicated process and we're very grateful to have a formal affiliation with Baylor College of Medicine and Dr. Searle's department. So thank you, sir, for that. We also have an excellent captioner as you noticed, Marie Bryant, based here in Houston. And our ILRU team, our webcast team is exceptional and they include: Marj Gordon, Sharon Finney, Marissa Demaya, Maria del Bosque, Tajauna Arnold and we welcome you back, not just on November 2, but we have a couple of things in between. Next Wednesday there is going to be a webcast on -- a two parter, one on Wednesday and one on Friday, the topic being making housing a home, identifying funding sources for accessible, affordable, integrated housing. So that's part of the IL NET program, extremely good topics. On the 31st, that rings a bell. I don't know if candy is going to be handed out, but there is going to be a presentation on reasonable accommodations and reasonable modifications in housing. So we have a three-fer going on housing and then we'll have next Thursday -- Thursday of November 1 is going to be a webcast on exercise and spinal cord injury. And this is from the Research and Training Center on spinal cord 39 injury and reduction of secondary conditions so that ties in to the presentation that we'll have the next day. All that to say is we've got events coming up. We urge to you check back on the webcast calendar and meanwhile for all of us at ILRU, we thank you for being part of our audience today and we'll see you next time. Good afternoon. >> DANIEL: Thank you, Laurel. >> LUCY: Thank you. Thank you to the audience. >> DANIEL: And have a good weekend.