Intellectual and Other Developmental Disabilities Foundations *Disability Defined: A physical or mental impairment that substantially limits one or more of the major life activities of such individual; a record of such an impairment; or being regarded as having such an impairment. For a disability to be termed intellectual or developmental, the onset of the disability must be before the age of 22. *Causes of Intellectual or other Developmental Disabilities -genetic disorders -infections or intoxication during pregnancy -injury to brain/central nervous system during birth -premature birth and/or low birth weight *Other Disabilities -Cerebral Palsy -disorder of movement and posture due to a non-progressive defect of the immature brain. -Epilepsy -a condition of abnormal brain activity that results in a seizure. -Autism -Autism is a Pervasive Developmental Disorder (PDD). PDD is a type of neurological disorder that expresses itself through severe and pervasive impairment in a number of developmental areas. -Dyslexia - Dyslexia refers to a serious reading disorder. *Person First Language Labels- -The danger in labeling is that we tend to act as though everyone who shares a label is alike. When using person first language, the emphasis is on the person and the characteristics shared by otherwise different people are described second. -Handicap vs Disability -A Handicap is not a synonym for disability. The disability is caused by a physiological dysfunction, while a handicap is caused by the environment’s lack of accommodations. Trends *Early Beliefs Early reformers believed that mental retardation was due to parents who had bad habits or engaged in unlawful or immoral behavior. Because of this, out of home care was stressed. There were not many options for people with mental retardation, so they were often placed into institutions. With World War II and the Great Depression being in the forefront of society, not a lot of attention/funds were given to institutions to care for people with disabilities. Conditions in the early institutions were horrible. It was believed that developmental disabilities were hereditary and the cause of many social problems. To prevent the spread of mental retardation, professionals called for segregation and sterilization. *De-Institutionalization Interest in improving living conditions for people with disabilities increased in the 1970’s. This increase was the result of: -Parent Organizations -Changing nature of the population living in institutions -Reforms initiated by the Kennedy administration Not long after things started to improve, the Normalization principle came about. Normalization is the utilization of means which are as culturally normative as possible, in order to establish and/or maintain personal behaviors and characteristics which are as culturally normative as possible. The normalization principle stressed the importance of using typical and normal methods to establish valued outcomes for people. Normalization is important because: -It helps to focus attention on what people with disabilities can achieve -It works to prevent devaluation of people -It can decrease discrimination against people based on a disability *5 Dimensions of Normalization principle 1. Community presence- means that both the programs and the people themselves must be situated in the community. 2. Community participation- is a measure of the extent to which people are socially integrated into the community. 3. Skill Enhancement- Human service agencies should be committed to helping each person achieve greater independence. 4. Image enhancement- refers to the importance of projecting positive images. 5. Autonomy and Empowerment- means transferring power and control to people with developmental disabilities. Individual control over decision making is promoted. To carry out the dimensions of the Normalization principle, human service workers started focusing on what people with disabilities wanted to learn rather than what they couldn’t do. Legal Rights *General Legal Concepts I. Equal Protection and Due Process- People with disabilities must have equal access to all the services and opportunities available to other persons. II. Least Restrictive Alternative- means that services, programs and life situations should be provided in the most typical setting possible while still meeting the person’s needs. III. Informed Consent-requires both that the person have the capacity to make decisions and that information be provided that is relevant to the decision. IV. Guardianship/Conservatorship- If a person is declared legally incompetent, a guardian/conservator is appointed. What guardians can do: 1. Provide care, treatment, living and transportation, education, support and maintenance. 2. Assure the ward resides in the least restrictive setting. 3. Assure the ward receives the medical care and services. 4. Provide consent on behalf of the ward. Guardians cannot: 1. Place ward in a facility or institution (court order required). 2. Consent to psycho-surgery or removal of a limb(court order required unless emergency). 3. Consent to the removal of life support. 4. Consent to experimental biomedical or behavioral procedures. 5. Prohibit marriage or divorce 6. Consent to the ward’s termination of parental rights. 7. Consent to sterilization of the ward. Conservators act on behalf of an individual in managing financial resources. The guardian and conservator can be the same person. Both the guardian and the conservator are to act on behalf of the individual. They should always consider the wishes of their ward. V. Confidentiality- Information about a person with disabilities cannot be released to others without the consent of the person. VI. Punishment- Punishment should not be used. If an aversive procedure is to be used, it must be done: - as part of a defined and approved behavior management program. -consent must be obtained from the individual and/or his guardian. -it must be the least restrictive alternative. -the risks in using the procedure cannot be greater than the risks of not using it. -the ineffectiveness of less intrusive procedures must be documented. -the program must be designed, implemented, and monitored by highly trained, experienced staff. VII. Protection of Rights- an advocate should protect the rights and interests of people with developmental disabilities. The Human Rights Committee reviews the ongoing work of the agency and monitors all policies, procedures, and services to protect the rights of people with developmental disabilities. Statutory Laws and Regulations The Rehabilitation Act of 1973 Prohibits discrimination and requires employers and educational programs to make reasonable accommodations. The Education for All Handicapped Children Act of 1975 All children with disabilities must be provided a free and appropriate education in the least restrictive environment. Developmental Disabilities Assistance and Bill of Rights Act of 1990 Authorizes federal financial support for planning, coordinating, and delivering specialized services to people with developmental disabilities. The Americans with Disabilities Act of 1990 Protects people with disabilities from discrimination in employment, transportation, public accommodations, telecommunication, and activities of state and local government. Person-Centered Supports *Deficit Model of Service Delivery vs Person Centered Supports The focus of services is shifting from “fixing folks” to providing supports with a person centered approach. Person centered supports is a way of thinking about people as people instead of identifying them as their disability. Deficit Model -Focuses on fixing the person. -Is based in the medical model of service delivery. In the medical model of service the person temporarily gives up his rights for the sake of treatment. Since there is no cure for a person with developmental disabilities, treatment is for a lifetime. -Does not take into account what the person likes or dislikes. Person Centered Supports -Finds out what the person’s goals are before providing help. -Provides assistance to people based on personal preferences, desires, and needs. -More interested in what the person can do, than what he can’t do. -Focuses on understanding a person’s strengths and builds on them. -Requires a deep commitment to honoring people’s rights and dignity. -Tries to build a better life for a person, and understands that a better life can only be defined by that person. *Common Principles of Person-Centered Planning -The focus of the planning is on the person. -Family members and friends are a critical part of the process. -Information from professional assessments may be included, but only if it guides progress toward meeting the person’s goal. -The process works towards understanding what a person wants in his life and what his strengths are. -Planning should not be based on what is already available in the supports system. -Respect for the person as a valued member of society is part of the entire system. *Models of Person-Centered Planning Individual Service Design -Developed to help service providers plan for people who are difficult to support because of challenging behavior. McGill Action Planning System (MAPS) -Developed to plan for full inclusion of children with disabilities into regular classrooms. Personal Future Planning -Developed to be a tool used by families and friends of a person with a disability to change an uncooperative or rigid service system. Planning Alternative Tomorrows with Hope (PATH) -Developed to provide a concrete action plan Circle of Friends -Not intended to be a comprehensive tool, it highlights the importance of friendships and works to promote and support those friendships. Essential Lifestyle Planning (ELP) -Recognizes that it is important that a person’s day to day environment includes things that contribute to quality of life for her. Challenges for Person Centered Planning -Person centered planning assumes that a person knows what he wants. -Some people do not have many experiences to base preferences on. The plan should work to build opportunities for new experiences. -A person may have given up asking for what he wants. The person will have to learn that he can have what he wants. -The disability (physical or cognitive) is so severe, it is difficult for the person to communicate his preferences. Careful attention to non-verbal communication will be needed. -Friends and family need to commit time and energy to make the plan work and they may not be able to do so. Information is lost when family members or friends pass away. Documentation of a person’s history is vital in not losing important information. Relationships Historically, helping people form and maintain relationships has not been a focus of the work we do as service providers. Many people with developmental disabilities have very few friends and quite limited social networks. They have paid supports but do not have non-disabled friends. If an individual has only paid support, obviously something is missing. While we have strategies and processes for supporting people in forming and maintaining relationships, we must maintain a person-centered philosophy. How to get started: A useful tool that can be used to give a visual representation of a person and the people in their life is called a Relationship Diagram. A Relationship Diagram is a graphic representation of the folks the person knows and the relative importance of the relationship. Some questions to ask: -Who does he currently have relationships with? -How does he maintain those relationships? -Are there family members involved in the person’s life? -What relationships does he really value? -Who are the paid supporters in his life? -Who does he look forward to seeing? Types of relationships: *Intimate-Those who are closest to the person, who are truly part of his life and probably always will be. *Good Friends-Those who he really feels close to or regularly enjoys doing things with. *Occasional Friends-Friends the person does not see very frequently or folks they share special interests with. *Paid Supports-Those who are paid to be a part of the individual’s life. *Acquaintances-Those folks who the person sees on a regular basis and recognizes but does not know well. Strategies for fostering relationships 1. Reciprocity- Each person in the relationship must leave the connection feeling they have gained something. 2. Rekindling relationships-Tracking down folks who the person had a valued relationship with in the past and attempting to reestablish the connection. 3. Formal matching-A formal approach that establishes compatible pairs of people to spend time together. 4. Self-advocacy- Frequently spending time around people who share an interest with us. The more we are around the same people, the better we know them and the tighter our relationship grows. Through evaluation of their own efforts, committed supporters will find ways to successfully support people in friendships and other valuable relationships. Human Sexuality Families and staff sometimes view folks with disabilities as “perpetual children.” They think that they will be forever innocent and ignorant of their own sexuality. The goal of education in human sexuality is to give people a positive attitude toward their own sexuality and an enhanced self-image. Staff who provides sexual education must: -Possess the correct information -Have a positive attitude about human sexuality -Be able to talk about sexuality in an open and honest manner Reason’s for assisting persons with developmental disabilities to understand human sexuality. -Difficulties in learning -Physical and social overprotection -Segregated living situations -Recognition of legal rights -Public health concerns Ten Topics for a Human Sexuality Program: 1. Anatomy and physiology 2. Maturation and body change 3. Birth control 4. Sexually transmitted diseases and their prevention 5. Masturbation 6. Responsibility for sexual behavior 7. Inappropriate sexual behavior and sex offenses 8. Same sex and opposite sex activities 9. Psycho-social aspects of behavior and psycho-sexual development 10. Marriage and parenthood Staff guidelines for education in human sexuality: -Be guided by the policies and procedures for your agency -Teach and provide counseling that is consistent with individualized plans -Find out what the person already knows and feels about his or her sexuality -Determine the reason and goal for the teaching and/or counseling -Start with the person’s language and communication style -Be straightforward, simple and direct -Do not interpret silence as knowledge -Keep a sense of humor -Honesty and sincerity are also good responses to feelings of embarrassment and anxiety. -Do not lecture or moralize -Emphasize that sexual behavior carries with it responsibilities Teaching about human sexuality can be done in one of two ways: 1. Formal- Developing an educational program, selecting instructional materials, and providing individual and group instruction. 2. Informal-providing education during normal daily routines Staff behaviors and actions as a man or woman will influence what people with disabilities learn and how they behave. Being a good role model is an important aspect of working with people with disabilities. Working with Families There are many books and resources available to help in raising a child without disabilities, but models of parenting and information about disabilities are sometimes difficult to find. Parents may become isolated from family, friends, and professionals who often seem unable to identify with the emotional issues experienced by parents of children with disabilities. Points of time when information is needed for families who have kids with disabilities: -When the child is born -When the child enters a school program -When the child leaves school to begin employment -When the child moves away from home Information that is needed: -Which agencies or professionals specialize in evaluations of children with developmental disabilities. -Assistance in understanding technical terms used to describe their child’s disability. -What counseling services are available to help cope with their feelings. -Normal development techniques -Behavior management techniques -Instructional activities and materials for use at home -Specialized services(occupational, physical and speech language therapy) -Community services for adults for employment and residential supports -How to apply for supplemental security income (SSI) -Wills -Trusts -Custody issues Staff Expectations Regarding working with Families: -Expect each family to be different -Respect each family’s interest and tastes and try to not change them -Expect each home environment to be different -Expect that parents and family members want and need information regarding their loved one and different times Adaptive Equipment Adaptive equipment is any device or technique that will allow someone to do something that they can’t do otherwise because of some kind of disability. Adaptive equipment, also known as assistive technology, boost your ability to do something you enjoy. What may be indispensible for one person may not be of the slightest interest to the next. Adaptive equipment is designed to help with: -Perception and cognition Eyeglasses and hearing aids -Communication skills Picture/icon boards Pre-recorded messages on computerized voice boxes -Personal care/daily living skills Adaptive spoons, forks, plates, and cups Machines that scoop food -Mobility and positioning Ramps Wheelchair lifts Accessible restrooms, baths, desks etc -Environmental access and control TV/radio remote controls Environmental control units -Vocational skills Adapted tools and machinery Computers -Recreation and leisure Adaptive devices for bowling, hunting, skiing, boating, fishing, etc…. Adaptive equipment is a consumer-driven process based on assessment of an individual’s abilities, interests, and needs. It is important to identify the intent of the adaptive equipment and the outcomes hoped to be achieved before making decisions about specific equipment. Leisure and Recreation Quality supports should always include opportunities for lifelong learning, work, and leisure. Leisure is an activity that individuals choose to engage in during free time. The importance of leisure time is to help promote physical health, use free time, reduce inappropriate social behaviors and to help in teaching social and communication skills. Special vs. Generic Activities -Special Activities are those designed specifically for people with developmental disabilities. -Generic Activities are activities available to anyone in the community. People with developmental disabilities should be encouraged to join in activities that are available to everyone else, when able. Leisure and Recreation consist of: -Physical Activities-contribute to improved mental and physical health. *bowling, baseball, playing catch, taking a walk, etc -Cultural Activities-can provide opportunities to discover new interests and develop social networks in the community. *arts and crafts, theatre, fairs, dances, concerts -Social Activities-can provide opportunities to interact with people. *dances, picnics, holiday celebrations -Outdoor educational activities-provides opportunities to be outside and learning about nature. *outdoor sporting events, nature walks, bird watching -Mental recreational activities-provides opportunities to learn while having fun. *cooking classes, games, hobbies, library activities Barriers to Integrated Leisure 1. Services designed by and non-disabled people 2. Lack of accessible facilities 3. Lack of transportation 4. Lack of qualified staff 5. Financial considerations Supported Employment Rather than forcing individuals to work their way through a series of day programs, human services agencies have recognized the value of participation in meaningful productive work and have developed a variety of work options. Supported employment must include: Competitive work, integrated work setting, and on-going support services. Noteworthy components: It is paid employment It is intended for individuals with varying disabilities Can range from working 1 hour a week to 39 hours a week *Natural job supports can derive from supported employment and should always be encouraged *Natural supports-To work in partnership with the employer to draw on all of the resources inherent in the workplace (recognizing that they may need to be modified, enhanced or adapted) to train, acclimatize, socially connect and support the ongoing success of the new employee throughout the term of his/her employment. Typically a person will take over assisting the person with disabilities but isn’t being paid to do so. They are simply a coworker or friend. Models of Supported Employment **Enclaves- Groups of three to eight people with developmental disabilities are placed in a work setting with non-disabled peers. **Mobile crews- Three to eight individuals work as a crew that moves from site to site. **Individual placement- Individuals are matched with available jobs, matching is based on the strengths and interests of the individual. Staff’s role in supported employment -know the person being supported with regards to his/her likes and dislikes and abilities -be a job coach/role model while on the job -encourage the person being supported to do as much of the job as he/she can independently -report to employment specialist or supervisor problems that arise within the job(ie.. equipment failure, lack of interest from person being supported etc) Maintaining a Safe Environment People with developmental disabilities must be given the dignity of risk and a chance to learn. When supporting a person with developmental disabilities, staff should be prepared to let people learn from small mistakes but no person should be allowed to risk a dangerous accident. Agencies have a responsibility to maintain safe environments. Accidents An accident is an unplanned act or event resulting in injury or death to people or damage to property. About 85% of accidents are caused by unsafe behavior. Unsafe environments caused the other 15%. Individual attributes for safe behavior: Know their physical limitations. Know how to perform tasks Practice performing tasks. Perform tasks in a safe manner. Develop a concern about safety. Accidents that can happen in the home: Fire Electrical Shock Poisons Falls Accidents that can happen at work: Falls Improper handling of objects Improper use of equipment Contact with hazardous materials Outdated physical facilities Accident Prevention and Reports Training in accident prevention does not mean overprotection. Staff should prepare to function in complex environments. It is important to fill out accident reports in accordance with your agency policies. Promoting Health Health is very important to quality of life. Four areas for maintenance of health include: Nutrition, exercise, personal health care, and medical care. Nutrition Figure 1 Food Pyramid One size doesn't fit all. 1. Activity-is represented by the steps and the person climbing them, as a reminder of the importance of daily physical activity. 2. Moderation-is represented by the narrowing of each food group from bottom to top. The wider base stands for food with little or no solid fats or added sugars. These should be selected more frequently. The narrower top area stands for food containing more added sugars and solid fats or added sugars. The more active you are, the more of these foods you can fit into your diet. 3. Personalization-is shown by the person on the steps, the slogan, “Steps to a healthier you.” 4. Proportionality-is shown by the different width of the food group bands. The widths suggest how much food a person should choose from each group. The widths are just a general guide, not exact proportions. 5. Variety- is symbolized by the six color bands representing the *five food groups of the pyramid plus oils. This illustrates that foods from all groups are needed each day for good health. 6. Gradual improvement-is encouraged by the slogan. It suggests that individuals can benefit from taking small steps to improve their diet and lifestyle each day. *Five food groups-grains, vegetables, fruits, milk, meat & beans. Special Diets When a physician prescribes a special diet for a person, this diet is an important part of the overall treatment plan and should be followed. When a prescribed diet is carefully followed, the need for medications can sometimes be avoided or reduced. Constipation Constipation can be a problem for people with developmental disabilities because: They may have a physical disability that restricts movement. They are often dependent upon others for food and drink. They often have to take medications for which constipation is a side effect. Drinking plenty of water is crucial for people who have limited mobility. This will help prevent constipation. Exercise Positive effects of exercise: Improved circulation and respiration Improved elimination of waste Stronger muscles and bones Better weight management Reduction of stress An ideal exercise program is three 20 minute sessions per week. A person will participate in an activity more frequently and for longer periods if the exercise is enjoyed. A passive exercise program may be necessary for people who have a physical disability that prevents movement. Passive exercise means that someone else is moving the person’s limbs. Personal Health Care Personal health care involves bathing, washing hair, cutting nails, brushing teeth, and using the toilet. Personal health care is important because it helps a person feel good about him/herself as well as it helps to prevent sickness. When providing support with personal health care, support staff need to be aware of the choices and preferences of the person, their abilities, and that helping them infringes on privacy. General principles for providing support: Give only as much assistance as is needed Promote participation Build on existing skills Explain what is going to happen to the person Honor choices made by the person Take time for the person to tell you that choice Medical and Other Services People with developmental disabilities have the right to be included in medical treatment decisions. Ways a support person can help with medical services: Go with the person to medical events Help medical staff explain things Ask questions Help medical staff understand the person Make sure the person is comfortable with medical staff Help medical staff provide treatment in a way that will be most acceptable to the person Make sure the person gets same level of care as any other patient Drugs and Medications Drugs and medications are interchangeable terms. They refer to any compound that may be used in the diagnosis, treatment, or prevention of disease or other abnormal condition, for the relief of pain or suffering; or to control or improve any physiological or pathological condition. Two classifications of drugs are prescription and non-prescription. -Prescription drugs require a doctor’s order and are designed to relieve symptoms or cure the underlying disease. -Non-prescription drugs are available over the counter at local drugstores. They do not cure diseases but are designed to relieve symptoms associated with illness. How Drugs Work Drugs and medications produce chemical reactions in the body that enable the body’s natural defense system to restore health. Success of treatment depends on: *Selection of the right drug, *The correct dosage, *Taken at the recommended time of day. Side effects are undesirable reactions to a drug. Use of Medication by People with Developmental Disabilities The most common types of medications prescribed for people with developmental disabilities include: *Anti-psychotic *Anti-anxiety *Anti-depressant *Stimulants *Anti-epileptic drugs Anti-psychotic and anti-anxiety drugs Primarily prescribed to chemically alter the person’s behavior. They are generally used for aggressive, destructive, and r self-abusive behaviors. Anti-psychotic drugs generally are strong or major tranquilizers. A variety of side effects are possible and should be monitored closely. Some side effects are: *Dry mouth *Blurring of vision *Urinary retention *Abdominal pain *Constipation Anti-Depressant Drugs Prescribed for depression in adults. Symptoms of depression include: *Psycho-motor disabilities *Sleep disorders *Loss of appetite *Weight loss *Constipation When prescribed for people with developmental disabilities, they are also used for: *hyperactivity *aggression Possible side effects are: *Dryness of the mouth *Drowsiness *Lethargy *Nausea *Motor Tremors Stimulant Drugs Prescribed to treat minimal brain dysfunction, hyperactivity, and attention deficit disorder. The intended outcome is to improve attention span of the individual. They are also prescribed for people who: *Are aggressive towards others *Are impulsive, or *Are restless Possible side effects are: *Decreased appetite *Weight loss *Insomnia *Headaches *Drug induced psychosis *Rapid or irregular heart rate *Dizziness *Drowsiness *Increased verbal behavior Anti-Epilepsy Drugs Used for the treatment of seizure disorder. Approximately 50% of people with developmental disabilities have seizure disorders. Possible side effects: *Decreased attention span *Decreased motor performance *Increased hyperactivity *Drowsiness *Loss of appetite *Unsteady gait *Slurred speech *Irritability Staff Responsibilities Medication should NOT be the intervention of choice in the treatment of behavioral disorders, and should never be used for the convenience of staff. Even when a medication is effective in eliminating a behavior, the individual does not learn new and more desirable behavior patterns. Medication Plans Medication plans should have the following information: *Purpose and desired effect of the drug. *Response time for accomplishing the desired effect. *Undesired effects that may occur. *Special consideration when other medications are taken. *Special administration or storage instructions. *Conditions under which to notify physician