Family Caregivers Unite!

Angela Geddes is the Assessment Coordinator at the FASD London Region Assessment Clinic, http://www.fasd-londonregion.com/. Darlene --. is an Early Childhood Educator and Homeschooling Mom of two who’s worked with children for the past 24 years in formal and home childcare settings. They talk about their lives, careers, experience with FASD children, work and responsibilities. They highlight the challenges that FASD creates for children, for their families and their family caregivers, and for the providers of social and healthcare services. They identify what they see as the most important needs and services for helping meet the challenges created for children living with FASD, for the families and family caregivers, and for providers of healthcare and social services. They say what more they would like to do and see done to improve services for FASD children, their families and their family caregivers.

Marni Soupcoff, a lawyer, is a newspaper columnist and Executive Director of the Canadian Constitution Foundation, and previously served the Institute for Justice. She describes her work and experience with family caregiving. She explains autonomy and highlights the challenges it creates for families and family caregivers caring for family members with mental illness or brain damage who may be unable to make decisions in their own best interests. She discusses the challenges created for privacy and social justice laws and for medical practice by autonomy when its lore is applied to individuals living with mental illness or brain damage. She says what more she would like to do and see done to advance understanding of autonomy’s implications for individuals, their families and family caregivers. She shares her message for family caregivers without substitute decision-maker who encounter difficulties getting their alerts listened to by psychiatrists and other healthcare professionals.

Dr. Gordon Atherley, docg@familycaregiversunite.org, holds the British equivalents of the North American MD and PhD degrees, and LLD, Honoris Causa. He highlights his own experience of bullying within a Canadian organization focused on mental illness. The bullying caused harm and loss to many people who were associated with the organization, who depended on it, or who trusted it. He believes that the bullying reflected Narcissistic personality disorder, as defined by various expert organizations. He analyzes his own experience of being bullied by a healthcare professional and says why he advocates for high-quality research. He details challenges created for family caregivers and their family members, and the supports that they need. He says what more he’d like to do and see done, and by whom, to promote prevention of bullying by healthcare professionals and support for people who are bullied. He shares his message for people who have been bullied by healthcare professionals.

As Chief Advocate at K&A Inc., http://kealeyandassociates.com/, Marc Kealey is a leading voice for transformation in health care. He talks about his family, the experience of being bullied, the ways the bullying occurred, and its effects on his family. He says as much as he can about the apparent motives of the bullies. He discusses bullying, especially as it affects families, in healthcare, politics, and internet safety, sectors in which he has wide professional experience. For these sectors he explains what needs to be done to counter bullying that does or could occur, especially as it does or could affect families. He says what more he would like to do and to see done and by whom to counter bullying and its effects on families that do or could occur in healthcare. He comments on the helpfulness of VoiceAmerica`s talk show Family Caregivers Unite for people who have experienced bullying.

Craig Lewis is a Certified Peer Specialist living in Massachusetts, http://www.betterdaysrecovery.com/. He’s struggled immensely throughout his life, but he’s successfully transformed it into a life of wellness. He talks about his life, career as author of ‘Better Days – A Mental Health Recovery Workbook', and his personal experience of being bullied. Drawing on his experience and of others he discusses the forms that bullying takes and how bullies bully. He talks about resisting bullying, what he think needs to be done to improve prevention of bullying and of protection against it, and how people who are being bullied should respond. He explains other ways in which people who are being bullied should be helped. He says what action he would like to see by the communities of people living with mental health challenges to help individuals living with mental health challenges deal with bullies. He shares his message about bullying for people living with mental health challenges.

Joryn Jenkins is a trial attorney with 36 years of courtroom experience, now in private practice at Open Palm Law, http://openpalmlaw.com/, in Tampa, Florida. She discusses her career and her law firm ‘Open Palm Law’. She explains Collaborative Law and highlights its principles. She talks about the experiences of divorcing couples, their children who are living with persistent disabilities, and their families. She explains the ways in which collaborative divorce works to help manage or overcome the challenges she’s mentioned for mothers, fathers, their children living with persistent disabilities and their families. She says what more she would like to do and to see done to promote collaborative divorce as a positive change for mothers and fathers and for their children who are living with persistent disabilities. She comments on internet radio as an opportunity for family caregivers to discuss their experiences of divorce when a child is living with persistent disability.

Dr. Marcy Darnovsky is Executive Director of the Center for Genetics and Society, http://www.geneticsandsociety.org/. She describes her career and the Center’s work. She explains human gene editing, the ways it could be used for medical treatment and research, and the pros and cons. She explains germline gene modification and the Center’s position on its benefits and risks. She highlights policies on human germline modification in influential countries and identifies the main differences. She explains why the prospect of human germline modification is so controversial. She says how well she thinks North American would-be parents and family caregivers understand human gene editing and human germline modification, what more she would like to see done to improve understanding of human gene editing and human germline modification, and what more governments should do to improve information flows to parents, would-be parents and family caregivers, researchers, and the medical profession.

Rob Gain, lawyer, joined Koskie Minsky’s Class Actions group, http://kmlaw.ca/lawyers/?practicearea=57, in 2014 after practicing at another leading class-action law firm. He describes his career and experience as a lawyer especially in class actions, and the work of the Class Actions group. He says what a class action and its stages are. He explains the things that lead to class actions, what these seek to achieve, the decisions expected from the Court, and the possible outcomes and implications. He highlights the broader outcomes of class actions, and the implications and for whom, and out-of-court settlements. He explains what people have to do and decide for themselves if they are interested in launching or joining a class action. He explains what normally happens to the evidence that’s been submitted to the Court once a class action is over. He discusses the influence of class action suits on governments in Canada.

Jane De Pauw lives in Sherwood Park, Alberta, Canada, with her husband and two children who were adopted through the Alberta foster care system. Sylvie Hebert was born in Buckingham, Quebec, Canada. She and her husband started their own family and then set up their own medical foster home. They explain the Adoption Society of Alberta, http://www.adoptionabi.com, and the support it provides for parents who have adopted children. They discuss the experience of adoptive parents. They highlight what they each see as the challenges faced by parents when the children they have adopted have special needs related to mental health disabilities and physical health. They explain the ways the Adoption Society’s support helps overcome the challenges with disabilities such as fetal alcohol spectrum disorder who are living at home and when they also are at school. They say what more they both would like to do and see done to promote the Adoption Society of Alberta.

Kirk Pion is Vice President of Design & Development for the UnitedHealthcare Innovation Centers of Excellence. Dr. Vidya Raman-Tangella, a physician, heads UnitedHealthcare’s Innovation Center of Excellence. They describe the company, UnitedHealthcare, http://www.uhc.com/, and explain their work in innovation. They discuss issues and challenges experienced in America by caregivers caring for aging or disabled family members, and say why UnitedHealthcare’s Solutions for Caregivers are needed. They explain the ways in which the needs of American caregivers caring for aging or disabled family members' needs are being successfully met by UnitedHealthcare’s Solutions for Caregivers. They discuss gaps that caregivers may be experiencing, their feedback, and what is being learned from caregivers by UnitedHealthcare. They explain where United Healthcare is headed with Solutions for Caregivers, why it should move forward, its other programs, and why it is OK for caregivers to ask for help.

Mark Courtepatte is co-chair of the Hamilton and Area Parent and Caregiver FASD (Fetal Alcohol Spectrum Disorders) Support Group, http://www.hamiltonfasdsupport.ca/, and one of the organizing members of the Youth and Sibling FASD Support Group. He describes his work, the experiences of FASD that his work has created for him, and the Groups’ support that’s provided to school children, and their families and family caregivers. He discusses the challenges created by FASD for children beginning their lives as school children, changing from children into teenagers, and completing school and moving on to adult life. He explains the ways in which support helps school children, their families and their family caregivers overcome the challenges. He says what more he wants to do and to see done, and by whom, to promote support for elementary and high-school children living with FASD, and for their families and their family caregivers.

lban Maino, who is based in Portland Maine, has 25 years of experience as a film director and producer. He refocused his expertise on dementia when he learned that his grandmother was diagnosed with Alzheimer’s disease. He talks about his career and says why the diagnosis of his grandmother’s Alzheimer’s disease caused him to change his career so decisively. He explains the ways in which he provides Memory Lane TV Therapeutics, http://memory-lane.tv/, for dementia. He discusses Memory Lane TV’s use of techniques of reminiscence, story-telling and the sense of smell. He explains Memory Lane TV’s use of customization, musical sessions and nature sessions in films. He shares his ideas for expanding Memory Lane TV, the types of help he is looking for and who he wants to provide the help. He shares his message about dementia care by Memory Lane TV Therapeutics for Dementia.

Dr. Éthelle G. Lord, Founding President of the International Caregivers Association, www.icareassoc.com, discusses improvements she wants to see in dementia care, the main features of the Discus Dementia Home, and how it will help in bringing the improvements. She explains how the Discus Dementia Home Model of Care and Social Community supports individuals living with dementia, and their families and family caregivers. She talks about care partners and how are they trained to support the individuals. She highlights how the social and community support takes account of culture and language of individuals, their families and their family caregivers. She explains the factors to be considered when a Discus Dementia Home is suggested for a particular region. She says where she is considering setting up Discus Dementia Homes and how far along these are, what types of developers or investors she’s looking for, and what help she wants from them. She shares her message about dementia care.

Michael Crystal is a partner at the law firm of Spiteri & Ursulak LLP, where he currently leads the class action group, http://crystalcyrlaw.com/. He explains difficulties faced by lawyers when clients and third parties have needs beyond the scope of therapeutic jurisprudence, what he means by therapeutic jurisprudence and healer, and what attracts his interest. He explains with examples ways in which the role of healer can assist lawyers, and their clients and third parties who have mental health needs that may be beyond the scope of the justice system even when criminality is involved. He highlights with examples what ‘community’ means for clients and third parties who have mental health needs that may be beyond the scope of the justice system even when criminality is involved. He says what more he would like to do and see done to promote understanding of the concept of the lawyer as healer in the law profession’s work in of the justice system.

Dr. Terry Coleman was a police officer for nearly 40 years including ten years as a chief of police. Subsequently he was a Deputy Minister for the Saskatchewan provincial government with responsibility for policing and corrections. He describes his current work as a Public Safety Consultant, his research, and his career in policing and what he learned from it. He identifies what he sees as the most challenging of the challenges created by serious mental illnesses for police themselves, the people with whom the police become involved because of erratic and dangerous behavior, and for family members who also become involved. He describes what he sees as the most successful ways for helping overcome the challenges. He says what more he would like to do and see done, and by whom, to promote better understanding of the challenges that serious mental illnesses create for police and people with whom the police are involved.

Chris Summerville is a director of the Mental Health Commission of Canada. Debbie Sirota is a single parent of Tamara, aged 24, who lives with schizophrenia. They discuss services for persons with schizophrenia and their family caregivers, identify challenges the services respond to, and explore experiences. They examine the role of the family caregiver in the various stages of schizophrenia. They discuss the ways in which family caregivers become eyes, ears and voice for the persons they are caring for, and explore the special challenges this responsibility creates for family caregivers. They talk about quality of life for persons with schizophrenia and their family caregivers. They speak frankly about situations in which persons with mental illness suffer from depression, experience stigmatization, and get into trouble with the law. They identify the things that make the sun shine for them personally. They say what changes want to see to bring better support for family caregivers.

Tammy Lambert is diagnosed with schizoaffective disorder and is coping with delusional symptoms and mood instability. Sherri Matsumoto, who now lives with schizophrenia, was first diagnosed with mental illness as a teenager, but her first diagnosis was not schizophrenia. They highlight their own experiences of living with schizoaffective disorder and schizophrenia. They talk about their work creating hope for people living with schizoaffective disorder and schizophrenia. They discuss the challenges faced by people and their families living with schizoaffective disorder or schizophrenia, and they explain the ways their work helps in overcoming the challenges. They say what they would like to do and see done by the Schizophrenia Society of Canada and by Schizophrenia Community Radio to promote the work they are doing.

Ernie Bart is a member of the Board of Artbeat Studio, http://artbeatstudio.ca/. Lucille Bart is Executive Director and co-founder with their son Nigel, diagnosed with schizophrenia at age 19. They describe their personal experiences as parents of a son living with schizophrenia. They explain Artbeat Studio’s work with various forms of art, and the work of their son as Studio Facilitator of Artbeat Studio. They identify what they see as the most challenging of the challenges faced by individuals living with schizophrenia and by their families and family caregivers. They discuss the ways the artistic creative endeavour supported by Artbeat Studio brings mental health healing and empowerment that helps overcome the most challenging of the challenges they’ve identified. They say what more they would like to do and see done and by whom to promote artistic creative endeavour. And by the Schizophrenia Society of Canada and Schizophrenia Community Radio.

Elyn R. Saks is Professor of Law, Psychology, and Psychiatry and the Behavioral Sciences at the University of Southern California Gould School of Law; Adjunct Professor of Psychiatry at the University of California, San Diego, School of Medicine among other appointments. Dr. Lisa Doupe is an MD and a Fellow of the American College of Occupational and Environmental Medicine. She is a General Practice Psychotherapist specialized in care of persons whose high-risk behaviors involve them with the justice system. They discuss autonomy for persons with psychosis-related and other mental illnesses, how questions of autonomy arise, the importance of autonomy, the idea of autonomy shared with family caregivers, and key safeguards, such as the person’s freedom to change their minds about sharing autonomy. They discuss electronic health records’ impact on persons’ autonomy. They say what more they would they like to see done to promote autonomy and shared autonomy with appropriate safeguards.

Dr. Xavier Amador, the Founder of the LEAP Institute, is an internationally renowned clinical psychologist and leader in his field. He describes his research, personal life and professional experience. He explains LEAP (“Listen-Empathize-Agree-Partner”), its focus on relationships, and the purposes he saw for it. He discusses the challenges created by schizophrenia for individuals who live with it, for their families and family caregivers, and for providers of medical treatment for schizophrenia. He explains how LEAP helps in overcoming the most challenging of the challenges. He says what more he would like to do and see done to promote understanding of the value of listening, empathizing, agreeing, and partnering in schizophrenia. He says what more he would like to see done by the Schizophrenia Society of Canada to promote understanding of the value of listening, empathizing, agreeing, and partnering in schizophrenia.