Advocacy Training Push America Team Events

Transcription

1 Advocacy Training Push America Team Events I. OVERVIEW Due to the nature of Push America s Cycling Events, it is imperative that team members are not only comfortable working with people with disabilities, but are also exceptional spokesmen on their behalf. Each summer, more than 100 members of Pi Kappa Phi Fraternity take on the challenge of riding their bikes or leading the team on behalf of people with disabilities. This training will provide team members an opportunity to discuss their experiences, and share their knowledge on disability related issues. All of this is done in an effort to make our team members better people, team members, and spokesmen on behalf of people with disabilities. II. A SERVICE LEARNING APPROACH This advocacy training is designed to teach students about the differences people with disabilities have, and the impact these differences can have on their daily lives. Push America s Cycling Events are educational alone, as the team members participate in a variety of awareness-raising events throughout the summer. They are trained to answer basic questions about their journey: who benefits, why are they doing it, what is Push America, etc. This course will strengthen the educational component for the team member, and as a result will make them better educators and spokesmen for the organization and for people with disabilities. This training is designed with service learning at its core. It offers the team members a focus, facilitates their connection with each community, provides opportunities for group discussion, advises and supports them throughout their experience and evaluates their work. This outline is designed to offer structure for reflection on the team member s experiences with the Journey of Hope and Gear Up Florida. The structure will take them beyond the day to day experiences and learning to help them better understand the organizations and people they are serving and the impact their services will have upon their own development. Throughout the summer, they are encouraged to question, rather than to accept the realities they experienced in the communities and to recognize the power of an individual to affect change. III. OBJECTIVES The objective of this training is to provide team members with basic knowledge on certain types of disabilities commonly seen during friendship visits. While the information is basic, it should provide team members a basic understanding of certain disabilities, and give them the confidence to ask questions of clients, counselors, and other staff. Another objective of the training is to provide team members an opportunity to share their experiences with people with disabilities in a group setting. Following the interaction with people with disabilities, the team will discuss the friendship visit, and reflect on the prevalence of certain disabilities, the care shown to those with disabilities, and the impact of each team member. The objective of this course is not to enable you to become a disability professional. You will not be able to pinpoint all disabilities, and you will not be able to become a counselor for those with disabilities. You will simply be given an opportunity to share your experiences with your teammates. IV. IMPLEMENTATION

2 During the orientation period, members of the Push America staff will facilitate various discussions. The focus of these discussions will vary from tips for working with people with disabilities, to the Americans with Disabilities Act. Following the staff led discussions; project managers will periodically hold a friendship visit reflection. This is the time for team members to share and reflect on their experiences. V. RECOMMENDATIONS 1. Each team member is recommended to keep a friendship visit journal throughout the event. This journal should be kept separate from any other personal journal, and should contain factual information about the friendship visits, and the disabilities with which they have interacted. This will give team members an opportunity to constantly keep up with the many different characteristics, challenges, and abilities with which they come in contact. 2. Each team member is encouraged to actively participate in the group discussions and friendship visit reflections. This is the only way that each team member can gain the most from their experiences. No one team member can interact with every client at every friendship visit. This is why team members will rely on reflections to learn more about disabilities. 3. Team members are all encouraged to bring this experience back to their campuses and communities. Your role as a spokesman for people with disabilities does not stop at the end of the trek. In fact, it is just beginning. When you return home, get involved with local organizations. Get your chapter involved. Motivate others to do the same great things you are doing this summer. 4. Ask questions. If you do not know something, ask a staff member, client, counselor, or anyone. You are here to learn. And by learning, you are better preparing yourself to serve others.

3 WORKING WITH PEOPLE WITH DISABILITIES Working with individuals with disabilities is not much different than working with someone without a visible limitation. People are people; we have the same needs to share, laugh, have relationships, use our talents, be independent, and fulfill others' needs and to feel needed. Depending on the persons' disability, there may be special adaptations that are necessary for a program, trip or activity to accommodate for physical, developmental, and/or emotional needs. It is important to be aware of the need for adaptations and the individuals' needs because of their disability, but what is most important is that an individual with a disability is treated with the same respect and dignity that every human being is entitled to. Initially, people are sometimes overly concerned with doing the right thing and saying the right thing, in working with an individual with a disability. This anxiety often makes the initial experience harder than it needs to be. Responding to individuals with a disability in a way that is natural and comfortable to you is the best method. Relax and Be yourself - get to know a person with a disability just as you would anyone else. 2. Talk to the individual - not around them, above them, or through them. 3. Respect - each person you work with and encourage his/her involvement in any way you can. 4. Establish clear and appropriate behavioral/social limits. 5. Provide positive reinforcement - especially with individuals with developmental disabilities. 6. Get to know the people you work with -let them know you--even your inexperience with the disability they have. 7. Ask an individual about his/her limits - don't assume you know. 8. Facilitate independence - people will ask if they need assistance, or ask if you're not sure. 9. Use common sense. 10. Don't let yourself be taken advantage of - sometimes you may go along with someone because you don't want to hurt his/her feelings - or you feel sorry for them. Establish clear and appropriate behavioral limits and expectations. You cannot build a relationship on sympathy. 11. Be honest - with your feelings. 12. Be creative. 13. Be spontaneous - be aware of individuals' disabilities, but don't limit them or your program because of it. 14. Be flexible - and able to adapt. 15. Provide multi-sensory program activities - (auditory, visual, tactile, and kinesthetic) because each of us learns best in different ways. 16. Provide a balance - between age-appropriate and developmentally appropriate program activities. 17. Research the disability on your own. 18. Talk to the families - because they know the individual best. 19. Find out about any medications a person may be on - because many have behavioral side effects. 20. When in doubt, ask the person you are working with.

4 Down Syndrome DEFINITION Down syndrome is the most common and readily identifiable chromosomal condition associated with mental retardation. It is caused by a chromosomal abnormality: for some unexplained reason, an accident in cell development results in 47 instead of the usual 46 chromosomes. This extra chromosome changes the orderly development of the body and brain. In most cases, the diagnosis of Down syndrome is made according to results from a chromosome test administered shortly after birth. INCIDENCE Approximately 4,000 children with Down syndrome are born in the U.S. each year, or about 1 in every 800 to 1,000 live births. Although parents of any age may have a child with Down syndrome, the incidence is higher for women over 35. Most common forms of the syndrome do not usually occur more than once in a family. CHARACTERISTICS There are over 50 clinical signs of Down syndrome, but it is rare to find all or even most of them in one person. Some common characteristics include: Poor muscle tone Slanting eyes with folds of skin at the inner corners (called epicanthal folds) Hyperflexibility (excessive ability to extend the joints) Short, broad hands with a single crease across the palm on one or both hands Broad feet with short toes Flat bridge of the nose Short, low-set ears Short neck Small head Small oral cavity Short, high-pitched cries in infancy Individuals with Down syndrome are usually smaller than their non-disabled peers, and their physical as well as intellectual development is slower Besides having a distinct physical appearance, children with Down syndrome frequently have specific healthrelated problems. A lowered resistance to infection makes these children more prone to respiratory problems. Visual problems such as crossed eyes and far- or nearsightedness are higher in those with Down syndrome, as are mild to moderate hearing loss and speech difficulty. Approximately one third of babies born with Down syndrome have heart defects, most of which are now successfully correctable. Some individuals are born with gastrointestinal tract problems that can be surgically corrected. Some people with Down syndrome also may have a condition known as Atlantoaxial Instability, a misalignment of the top two vertebrae of the neck. This condition makes these individuals more prone to injury if they participate in activities which overextend or flex the neck. Parents are urged to have their child examined by a physician to determine whether or not their child should be restricted from sports and activities which place stress on the neck. Although this misalignment is a potentially serious condition, proper diagnosis can help prevent serious injury. Children with Down syndrome may have a tendency to become obese as they grow older. Besides having negative social implications, this weight gain threatens these individuals' health and longevity. A supervised diet

5 and exercise program may help reduce this problem. EDUCATIONAL AND EMPLOYMENT IMPLICATIONS Shortly after a diagnoses of Down syndrome is confirmed, parents should be encouraged to enroll their child in an infant development/early intervention program. These programs offer parents special instruction in teaching their child language, cognitive, self-help, and social skills, and specific exercises for gross and fine motor development. Research has shown that stimulation during early developmental stages improves the child's chances of developing to his or her fullest potential. Continuing education, positive public attitudes, and a stimulating home environment have also been found to promote the child's overall development. Just as in the normal population, there is a wide variation in mental abilities, behavior, and developmental progress in individuals with Down syndrome. Their level of retardation may range from mild to severe, with the majority functioning in the mild to moderate range. Due to these individual differences, it is impossible to predict future achievements of children with Down syndrome. Because of the range of ability in children with Down syndrome it is important for families and all members of the school's education team to place few limitations on potential capabilities. It may be effective to emphasize concrete concepts rather than abstract ideas. Teaching tasks in a step-by-step manner with frequent reinforcement and consistent feedback has been proven successful. Improved public acceptance of persons with disabilities along with increased opportunities for adults with disabilities to live and work independently in the community, have expanded goals for individuals with Down syndrome. Independent Living Centers, group shared and supervised apartments and support services in the community have proven to be important resources for persons with disabilities. Portions of a publication of the National Dissemination Center for Children with Disabilities (NICHCY).

6 Autism Autism is a complex, life-long, developmental disability that results in social interaction problems, communication difficulties, and restrictive or repetitive interests and behaviors. One in 500 persons might be affected by some form of the disorder. Symptoms of autism are measurable by 18 months of age. Parents and expert clinicians can usually detect symptoms during infancy, although a formal diagnosis is generally not made until the child fails to develop functional language by age two. Autism can be reliably diagnosed by or before age three. Approximately 20 percent of children with autism reportedly experience a "regression;" that is, they have apparently normal development followed by a loss of communication and social skills. Boys are three-to-four times more likely to be affected by autism than girls are. Autism occurs in all racial, ethnic, and social groups. Although there is currently no known cure for autism, autism is treatable. Persons with autism can make progress if they receive appropriate, individual intervention. Pre-school children who receive intensive, individualized, behavioral interventions show remarkable progress. In addition, limited pharmacological interventions are available to treat specific symptoms of autism. What causes autism? In the majority of cases, no specific underlying cause can be identified. A variety of factors are associated with increased incidence of some forms of autism. These include infectious, metabolic, genetic, neurological, and environmental factors. A working group convened by the NIH in 1995 reached a consensus that autism probably results from a genetic susceptibility that involves multiple genes. To date, genetic causes for one disorder commonly accompanying autism and one autism-spectrum disorder have been identified-fragile X and Rett Syndrome, respectively-and genetic "hotspots" for more classic autism have been indicated. Fragile X is the most common, genetically inherited form of mental retardation currently known and produces many of the same behaviors and symptoms as autism. Rett Syndrome, which affects only girls, is a progressive brain disease that produces a loss of language/social skills that is similar to autism and is classified as a pervasive developmental disorder (PDD). NIH research on possible genetic, infectious, immunological, neurological, and environmental causes and mechanisms of autism is underway. More research is needed, particularly in the areas of normal immune system development and regression. National Institute of Child Health & Human Development

7 Epilepsy According to the Epilepsy Foundation of America, epilepsy is a physical condition that occurs when there is a sudden, brief change in how the brain works. When brain cells are not working properly, a person's consciousness, movement, or actions may be altered for a short time. These physical changes are called epileptic seizures. Epilepsy is therefore sometimes called a seizure disorder. Epilepsy affects people in all nations and of all races. Some people can experience a seizure and not have epilepsy. For example, many young children have convulsions from fevers. These febrile convulsions are one type of seizure. Other types of seizures not classified as epilepsy include those caused by an imbalance of body fluids or chemicals or by alcohol or drug withdrawal. A single seizure does not mean that the person has epilepsy. INCIDENCE About two million Americans have epilepsy; of the 125,000 new cases that develop each year, up to 50% are in children and adolescents. CHARACTERISTICS Although the symptoms listed below are not necessarily indicators of epilepsy, it is wise to consult a doctor if you or a member of your family experiences one or more of them: -- "Blackouts" or periods of confused memory; -- Episodes of staring or unexplained periods of unresponsiveness; -- Involuntary movement of arms and legs; -- "Fainting spells" with incontinence or followed by excessive fatigue; or -- Odd sounds, distorted perceptions, episodic feelings of fear that cannot be explained. Seizures can be generalized, meaning that all brain cells are involved. One type of generalized seizure consists of a convulsion with a complete loss of consciousness. Another type looks like a brief period of fixed staring. Seizures are partial when those brain cells not working properly are limited to one part of the brain. Such partial seizures may cause periods of "automatic behavior" and altered consciousness. This is typified by purposefullooking behavior, such as buttoning or unbuttoning a shirt. Such behavior, however, is unconscious, may be repetitive, and is usually not recalled. A publication of the National Dissemination Center for Children with Disabilities (NICHCY).

8 Cerebral Palsy Cerebral palsy is a disorder in which muscle control and coordination are impaired due to brain damage. In many patients, speech and hearing are also affected, and the patient may also have mental retardation. Cerebral palsy is usually first noticed in infancy or early childhood. Each year, there are six new cases for every 100,000 people. Of these six, roughly two have mental retardation, and four have normal intelligence. Of these four, one is mildly affected, two are moderately affected, and one is severely affected. People who are mildly affected require very little attention and should perform more or less normally in school or at work. A moderately involved patient may require some assistance in his/her daily activities and may also need physical, occupational, or speech therapy, though he/she is usually able to attend either public school or a special school for those with disabilities. The severely involved patient is either predominantly or totally dependent on outside help and may be either homebound or institutionalized, depending on his/her mental state and other factors. The brain damage that produces cerebral palsy may result from a variety of causes. Sometimes it occurs before birth as a result of a disease or injury that affects the fetus in the mother's uterus. Difficulties during childbirth may also produce brain damage. In later life, it may result from various infections, vascular diseases, or head injuries. Each type of cerebral palsy is caused by damage to a different area of the brain. Damage to the motor regions of the cerebral cortex causes muscles to remain in a continuous state of tension or disorganized spontaneous muscular movements. Associated difficulties in speech, hearing, or vision are usually due to damage of the brain centers governing these functions. Similarly, mental retardation results when areas of the cerebral cortex concerned with intelligence and other higher functions are affected. The primary goal in treating cerebral palsy is to maintain or improve the functioning of the patient by the use of such services as physical therapy, occupational therapy, speech therapy, and social and psychological counseling. Therapy is of significant value to the mildly affected patient and may help a moderately involved patient to care for himself more effectively. Appropriate social and psychological counseling throughout he patient's life can be important in helping him adjust to his condition. Although there is no cure for cerebral palsy, the patient should be given maximum opportunity in both his home and educational environment to achieve as high a functional level as possible. Many patients can live relatively normal, productive lives if optimal use of their abilities can be realistically combined with appropriate therapy and satisfactory adjustments to their disabilities.

9 Quick Facts on Mental Retardation What is mental retardation? The American Association on Mental Retardation (AAMR) defines mental retardation based on the following three criteria: intellectual functioning level (IQ) is below 70-75; significant limitations exist in two or more adaptive skills; and the condition is present from childhood. Adaptive skills include communication, selfcare, home living, social skills, leisure, health and safety, self-direction, functional academics, community use and work. How many people are affected? Based on the 1990 census, an estimated 6.2 to 7.5 million people have mental retardation. The conditions cross all lines of racial, ethnic, educational, social and economic backgrounds. It can occur in any family. One out of ten American families is directly affected by mental retardation. How does mental retardation affect individuals? The effects of mental retardation vary considerably among people, just as the range of abilities varies considerably among people who do not have mental retardation. About 87 percent will be mildly affected and will be only a little slower than average in learning new information and skills. The remaining 13 percent will have serious limitations in functioning. However, with early intervention, a functional education and appropriate supports as an adult, all can lead satisfying lives in the community. What causes mental retardation? Mental retardation can be caused by any condition, which impairs development of the brain before birth, during birth, or in early childhood. The causes can result from abnormality of genes inherited from parents, errors when genes combine, or from other disorders of the genes caused during pregnancy. Use of alcohol or drugs by the pregnant mother can also cause mental retardation. Can mental retardation be prevented? Over the past 30 years, significant advances in research have prevented many cases of mental retardation. New attempts at treatment of a variety of causes are being developed. There are now improved ways to manage head trauma, asphyxia (lack of oxygen) and infectious diseases to reduce their adverse effects on the brain. Early intervention programs with high-risk infants and children have shown remarkable results in reducing the predicted incidence of subnormal intellectual functioning. The above information was obtained from The Arc s Q&A fact sheet on mental retardation. For more information, contact The Arc, National Headquarters, 500 E. Border St., S-300, Arlington, Texas 76010, 817/ otherwise call the American Association on Mental Retardation at 800/ for answers to specific questions.

10 AMERICANS WITH DISABILITIES ACT Signed into law on July , the Americans with Disabilities Act is a wide-ranging legislation intended to make American Society more accessible to people with disabilities. The Americans with Disabilities Act (ADA) prohibits discrimination on the basis of disability in employment, state and local government, public accommodations, commercial facilities, transportation, and telecommunications. The act also applies to the United States Congress. To be protected by ADA, one must have a disability or have a relationship or association with an individual with a disability. An individual with a disability is defined by ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such impairment, or a person who is perceived by others as having such impairment. ADA does not specifically name all the impairments that are covered. ADA Title I: Employment Title I requires employers with 15 or more employees to provide qualified individuals with disabilities with an equal opportunity to benefit from the full range of employment-related opportunities available to others. For example, it prohibits discrimination in recruitment, hiring, promotions, training, pay, social activities, and other privileges of employment. It restricts questions that can be asked about an applicant's disability before a job offer is made, and it requires that employers make reasonable accommodation to the known physical or mental limitations of otherwise qualified individuals with disabilities, unless the accommodation results in undue hardship for the employer. Religious entities with 15 or more employees are covered under Title I. Title I complaints must be filed with the U.S. Equal Employment Opportunity Commission (EEOC) within 180 days of the date of discrimination, or within 300 days if the charge is filed with a designated state or local fair employment practice agency. Individuals may file a lawsuit in federal court only after they receive a right-to-sue letter from EEOC. Charges of employment discrimination on the basis of disability may be filed at any EEOC field office. Field offices are located in 50 cities throughout the United States and are listed in most telephone directories under "U.S. Government." For the appropriate EEOC field office in your geographic area, call (800) (voice) (800) (text telephone) You can obtain publications and information on EEOC-enforced laws by calling (800) (voice) (800) (text telephone) For information on how to accommodate a specific individual with a disability, contact the Job Accommodation Network at (800) (voice/relay) ADA Title II: State and Local Government Activities Title II covers all activities of state and local governments, regardless of the government entity's size or whether it receives federal funding. Title II requires that state and local governments give people with disabilities an equal opportunity to benefit from all of their programs, services, and activities, such as public education, employment, transportation, recreation, health care, social services, courts, voting, and town meetings.

11 State and local governments are required to follow specific architectural standards in the new construction and alteration of their buildings. They also must relocate programs or otherwise provide access in inaccessible older buildings, and they must communicate effectively with people who have hearing, vision, or speech disabilities. Public entities are not required to take actions that would result in undue financial and administrative burdens. They are required to make reasonable modifications to policies, practices, and procedures where necessary to avoid discrimination, unless they can demonstrate that doing so would fundamentally alter the nature of the service, program, or activity being provided. Complaints of Title II violations may be filed with DOJ within 180 days of the date of discrimination. In certain situations, cases may be referred to a mediation program sponsored by DOJ. DOJ may bring a lawsuit where it has investigated a matter and has been unable to resolve violations. For more information, contact: Disability Rights Section Civil Rights Division U.S. Department of Justice P.O. Box Washington, DC (800) (voice) (800) (text telephone) Title II may also be enforced through private lawsuits in federal court. It is not necessary to file a complaint with DOJ or any other federal agency, or to receive a right-to-sue letter, before going to court. ADA Title II, Part II: Public Transportation The transportation provisions of Title II cover public transportation services, such as city buses, and public rail transit, such as subways, commuter rails, and Amtrak. Public transportation authorities may not discriminate against people with disabilities in the provision of their services. They must comply with requirements for accessibility in newly purchased vehicles, make good-faith efforts to purchase or lease accessible used buses, remanufacture buses in an accessible manner, and, unless it would result in an undue burden, provide paratransit where they operate fixed-route bus or rail systems. Paratransit is a service through which persons who are unable to use the regular transit system independently (because of a physical or mental impairment) are picked up and dropped off at their destinations. Questions and complaints about public transportation should be directed to: Federal Transit Administration U.S. Department of Transportation 400 Seventh Street, SW Washington, DC (888) (voice/relay) (202) (voice)

12 ADA Title III: Public Accommodations Title III covers businesses and nonprofit service providers that are public accommodations, privately operated entities offering certain types of courses and examinations, privately operated transportation, and commercial facilities. Public accommodations are private entities that own, lease, lease to, or operate facilities such as restaurants, retail stores, hotels, movie theaters, private schools, convention centers, doctors' offices, homeless shelters, transportation depots, zoos, funeral homes, day care centers, and recreation facilities, including sports stadiums and fitness clubs. Transportation services provided by private entities, such as taxicabs, are also covered by Title III. Public accommodations must comply with basic nondiscrimination requirements that prohibit exclusion, segregation, and unequal treatment. They also must comply with specific requirements related to architectural standards for new and altered buildings; reasonable modifications to policies, practices, and procedures; effective communication with people with hearing, vision, or speech disabilities; and other access requirements. Additionally, public accommodations must remove barriers in existing buildings where this can be done without much difficulty or expense, given the public accommodation's resources. Courses and examinations related to professional, educational, or trade-related applications, licensing, certifications, or credentialing must be provided in a place and manner accessible to people with disabilities, or alternative accessible arrangements must be offered. Commercial facilities, such as factories and warehouses, must comply with ADA's architectural standards for new construction and alterations. Complaints of Title III violations may be filed with DOJ. In certain situations, cases may be referred to a mediation program sponsored by DOJ. DOJ is authorized to bring a lawsuit where there is a pattern or practice of discrimination in violation of Title III or where an act of discrimination raises an issue of general public importance. Title III may also be enforced through private lawsuits. It is not necessary to file a complaint with DOJ or any federal agency, or to receive a right-to-sue letter, before going to court. For more information, contact: Disability Rights Section Civil Rights Division U.S. Department of Justice P.O. Box Washington, DC (800) (voice) (800) (text telephone) ADA Title IV: Telecommunications Relay Services Title IV addresses telephone and television access for people with hearing and speech disabilities. It requires common carriers (telephone companies) to establish interstate and intrastate telecommunications relay services (TRS) 24 hours a day, 7 days a week. TRS enables callers with hearing and speech disabilities who use text telephones (TTYs) and callers who use voice telephones to communicate with each other through a third-party communications assistant. The Federal Communications Commission (FCC) has set minimum standards for TRS. Title IV also requires closed captioning of federally funded public service announcements. United States Department of Justice