1 4 4 5 7 10 14 30 38 59 63 66 73 Credits: 91 This product has been made possible by a 91 grant from the Developmental Disabilities 122 Council of Pennsylvania. Content provided by Community Health Connections www.hcqu.org Design and layout by Stephanie Nau Renaissance Design www.renaissancedesignco.com Photos primarily courtesy of contributors to Stock X-Change 2 www.sxc.hu Listening sensitively to all types of communica- tion, verbal and non verbal Teaching skills that enhance the person’s quality of life Observing changes in physical health, mood, behaviors, etc. Providing habilitative environments Ensuring that proper care is accessed with respect to medical needs Monitoring treatments such as medications and behavioural programmes Helping people to develop and maintain social supports Participating in planning Contributing accurate and thorough information to the treatment team Dear Lifesharing provider, We hope that you will find the information in this Bringing someone new into your life and into your resource to be a valuable support to you as you family is not only a monumental decision, it is a provide support to others. thankworthy act that adds depth to the human and family experience. Some facts that may be of If you would like to provide comments and feed- interest to you are that people with intellectual back towards improving future editions of this and developmental disabilities (ID/DD) living with publication, please email Mary Nau at mnau@ families are less lonely, less likely to feel afraid, hcqu.org more likely to feel happy, and more likely to like All feedback will be considered for future editions where they are living*. of this publication. As you open your home and family to an individ- ual with a developmental disability who also has *National Core Indicators 2006-2007, 12,193 a mental illness (dual diagnosis or DDx), you will people interviewed across 19 states and one appreciate the selection of articles included in this regional area. resource digest. Your support of the person with a dual diagnosis is of particular significance. Jo Anne Nugent, Ed D, author of A Handbook on Dual Diagnosis says it best: In the past, there has been an unfortunate ten- dency to assume that the most important element of treatment is the expertise of the medical pro- fessional, such as the psychiatrist. In fact, in many situations, support people felt paralyzed until they could access this clinical expertise. Certainly, the clinical professional plays a key role in diagnosis and treatment of a person with a dual diagnosis. However, people who support the individual on a day to day basis have just as crucial a role to play. Some of the key functions they fulfill are: 3 What is “Dual Diagnosis”? The term dual diagnosis is often used to refer to people who have a substance abuse disorder and a mental illness. However, it is the same term we use in the field of intellectual and developmental disabilities (ID/DD) when we refer to someone who has an Intellectual or Developmental Disability (ID/DD) and also has a Mental Illness (MI). You may hear other terms such as co- morbidity, co-occurring illnesses, concurrent disorders, comorbid disorders, co-occurring disorder, dual disorder. All of these terms are interchangeable with the term “dual diagnosis.” What is an Intellectual or Developmental Disability (ID/DD)? Intellectual disability used to be, and often still is, referred to as Mental Retardation. It is a term used to describe someone who is limited or slower in their ability to learn new information and develop new skills such as communication, self-care and social skills. People with ID/DD learn and develop more slowly than typical children. The may take longer to learn to speak, walk, and take care of their personal needs such as dressing or eating. As many as three out of every 100 people have an intellectual or developmental disability (ID/ DD). The most common causes ID/DD are: Genetic conditions -- Abnormalities of chromosomes and genes. Examples of genetic conditions are Down syndrome (trisomy 21), fragile X syndrome, and phenylketonuria (PKU). Problems during pregnancy -- When the baby does not develop normally inside the mother. For example, a woman who drinks alcohol or gets an infection like rubella during pregnancy may have a baby with mental retardation. Perinatal problems -- Problems during labor and birth, such as not getting enough oxygen. Health problems -- Diseases like whooping cough, the measles, or meningitis. Mental retardation can also be caused by extreme malnutrition or being exposed to What is a Mental Illness? poisons like lead or mercury. Mental illness is any disease or condition affecting The diagnosis of mental retardation is made the brain that influences the way a person thinks, by looking at two main things. These are (1) feels, behaves and/or relates to others and to his the ability of a person’s brain to learn, think, or her surroundings. Although the symptoms of solve problems, and make sense of the world mental illness can range from mild to severe and (intellectual functioning or IQ); and (2) whether are different depending on the type of mental the person has the skills needed to live illness, a person with an untreated mental illness independently (called adaptive behavior, or often is unable to cope with life’s daily routines adaptive functioning). and demands. Intellectual functioning, or IQ, is usually measured by an IQ test. The average IQ score is, by definition, What Causes Mental Illness? 100. People scoring below 70 to 75 on the IQ Although the exact cause of most mental illnesses test are considered to have ID/DD. To measure is not known, it is becoming clear through adaptive behavior, professionals look at what a research that many of these conditions are child can do in comparison to other children of his caused by a combination of genetic, biological, or her age. Certain skills are important to adaptive psychological and environmental factors. One behavior. These are daily living skills (such as thing is for sure—mental illness is not the result getting dressed, going to the bathroom, and of personal weakness or a character defect, and feeding one’s self), communication skills (such recovery from a mental illness is not simply a as understanding what is said and being able to matter of will and self-discipline. answer) and social skills (interacting with peers, family members, adults, and others). Heredity (genetics): Many mental illnesses Most individuals with ID/DD will be mildly run in families, suggesting that the illnesses affected. They may be a little slower than the may be passed on from parents to children average person in learning new information through genes. Genes contain instructions for and skills. About 87% of people with mental the function of each cell in the body and are retardation will only be a little slower than responsible for how we look, act, think, etc. But, average in learning new information and skills. just because your mother or father may have a In adulthood, those with a mild intellectual or mental illness doesn’t mean you will have one. developmental disability can live independently Hereditary just means that you are more likely or live with a few supportive services to help them to get the condition than if you didn’t have an succeed at living on their own. affected family member. Experts believe that The remaining 13% of those with an intellectual many mental conditions are linked to problems or developmental disability score below 50 on in multiple genes—not just one, as with many IQ tests. These individuals will struggle at school, diseases—which is why a person inherits a at home, and in the community. A person with susceptibility to a mental disorder, but doesn’t more severe disability will need supports that are always develop the condition. The disorder itself more intensive during his or her entire life. Every occurs from the interaction of these genes and individual with an intellectual disability, regardless other factors—such as psychological trauma and of severity, is able to learn, develop, and grow. environmental stressors—which can influence, or trigger, the illness in a person who has inherited a susceptibility to it. Biology: Some mental illnesses have been linked to an abnormal balance of special chemicals in the brain called neurotransmitters. Neurotransmitters Source: http://www.medterms.com/script/main/art. help nerve cells in the brain communicate with asp?articlekey=20174 each other. If these chemicals are out of balance or are not working properly, messages may not 5 illness affects both males and females, certain make it through the brain correctly, leading to conditions—such as eating disorders—tend symptoms of mental illness. In addition, defects to occur more often in females, and other in or injury to certain areas of the brain also have disorders—such as attention-deficit/hyperactivity been linked to some mental conditions. disorder (ADHD)—more commonly occur in children. Psychological trauma: Some mental illnesses may be triggered by psychological trauma How Is Mental Illness Treated? suffered as a child, such as severe emotional, A mental illness, like many chronic illnesses, physical or sexual abuse; a significant early loss, requires ongoing treatment. Fortunately, much such as the loss of a parent; and neglect. progress has been made in the last two decades in treating mental illnesses. As a result, many mental Environmental stressors: Certain stressors— conditions can be effectively treated with one or a such as a death or divorce, a dysfunctional family combination of the following therapies: life, changing jobs or schools and substance Medication abuse—can trigger a disorder in a person who may be at risk for developing a mental illness.