|
|
|
|
|
.gif){kind=spacer} |
|
|
|  |
|
|||||||||||||||||||||||||
|
Back to Coming to Terms with Disabilities
A classification which encompasses a number of different problems of the heart and circulatory system such as high blood pressure (hypertension), hardening of the arteries (arteriosclerosis), coronary heart disease (disease of the veins or arteries of the heart), and rheumatic carditis (inflammation of the heart). These diseases may occur alone or in conjunction with other disabling conditions. For more information, contact : American Heart Association American Heart Association National Office Heart Disease Research Foundation Free - Write for a booklet titled " The Prevention of Cardio-Vascular Diseases" from the Heart Disease Research Foundation. Celiac sprue (also known as Gluten Sensitive Enteropathy) is a disease in which there is: actual or potential intestinal malabsorption of virtually all nutrients, with specific lesions of the small intestinal mucosa, and prompt clinical improvement following withdrawal of gluten from the diet. Genetic factors can play a role in the disease. It may first become apparent in infants when gluten is ingested, usually in the form of cereals and may persist throughout childhood, causing failure to thrive. Symptoms may include ; diarrhea, flatulence, weight loss, weakness, dehydration, anemia, and vitamin or mineral deficiencies. For more information write to: Celiac Sprue Association United States of America, Inc. An agency which provides legal advice, advocacy, and information on legislation affecting people who are hearing impaired. For more information, contact : New York Center for Law and the Deaf, Inc. National Center for Law and the Deaf Cerebral Palsy is a neuromuscular disability resulting from damage to the central nervous system occurring before birth, at the time of birth, or during the early years of life. Manifestations of the condition range from mild motor coordination impairment to severe motor incapacity and sometimes, is associated with more extensive conditions which may include intellectual, sensory, behavioral and perceptual problems, often in combination. Also see Ataxia, Athetosis. For more information, contact : UCPA of New York State, Inc. Governmental Affairs Office Under Article 36 of the New York State Public Health Law, effective April 1, 1978, this term means a public or voluntary non-profit home care services agency certified by the Department of Health; or a residential health care facility providing long term home health care service. Charcot-Marie-Tooth Disease (Peroneal Muscular Atrophy) Charcot-Marie-Tooth Disease, also known as Peroneal Muscular Atrophy, is a hereditary disorder marked by slowly progressive muscle weakness in the feet, lower legs, hands and forearms, and a mild loss of sensation in limbs, fingers and toes. The weakness results from the degeneration of nerves that stimulate muscle rather than from a degenerative process in the muscle tissue itself. Among the types of this disease are: hypertrophic-- this form of the disease more often effects the small muscles of the hand, loss of sensation is more pronounced, and it is also characterized by enlarged (hypertrophic) nerves and degeneration of the covering of fatty material (myelin) that insulates many of the body' s nerve fibers; and neuronal-- this form of the disease more frequently affects the lower limb functions and there is a greater loss of muscle bulk below the knee with weaknesses occurring in the ankles and feet. For more information, contact : National Foundation for Peroneal Muscular Atrophy Children's Resource Network (CRN) The CRN is a program administered by the New York State Office of Mental Retardation and Developmental Disabilities (OMRDD), which is designed to serve SSI recipient/eligible children, birth through 16 years old, who are developmentally disabled. Some examples of developmental disabilities are: mental retardation, cerebral palsy, autism, epilepsy or neurological impairment. The CRN is designed to coordinate the medical, social, rehabilitative and developmental services of program participants, assist parents and professionals in locating services available to children and arrange for new services where gaps are identified. Some of the services provided by CRN are as follows: diagnostic and evaluative tests advocacy medical/ dental services transportation coordination school programs/infant stimulation bilingual / bicultural services therapy social / recreational programs respite care / homemaker services summer programs counseling/parent support groups legal and financial support services For more information, contact : Children's Resource Network Office of Mental Retardation and Developmental Disabilities Chronic Bronchitis is an inflammation of the lining of the tracho- bronchial tree which causes abnormal secretion of fluids and mucus and interferes with the function of cilia which helps cleanse the respiratory tract. Frequently, it causes coughing and spitting. Contributing factors are smoke and air pollution, certain allergens and infections. The term, chronic, is applied when coughing and spitting continue for long periods of time and return each year, generally lasting slightly longer with each occurrence. Cigarette smoking is a major contributing factor. It affects an estimated 13. 7 million persons each year throughout the United States. For more information, contact : American Lung Association of New York State Chronic Care (or Long Term Care) Care for patients who, although they may not require as much intensive care as the acutely ill, do need the battery of facilities, services and skills which only a hospital or other specialized institution can provide. Client Assistance Program (CAP) The Federal Rehabilitation Act Amendments of 1984 (Public Law 98-221) provide for Client Assistance Programs to assist people with disabilities in understanding and securing the benefits and programs available under the Rehabilitation Act of 1973. (See Rehabilitation Act of 1973 for definition of this term.) For further information contact: Client Assistance Program (CAP) College Board Testing For Learning Disability Students There is an arrangement that can be made so that students who are learning disabled can take college board admission tests under special conditions such as extended time, separate test rooms, a reader, or a person to whom answers may be dictated and recorded. Arrangements must be made far in advance. For more information, write to : New York Association for Learning Disabled (NYALD) PSAT / MNSQT Committee on Special Education (CSE) This term refers to a multidisciplinary team established in accordance with the provisions of Section 4402 of Article 89 of New York State Education Law "Children with Handicapping Conditions. " (See "Article 89" for an overview of this part of Education Law.) In the past, this Committee was referred to as the Committee on the Handicapped. Multidisciplinary refers to the composition of the CSE, which must include at least a school psychologist, a teacher or administrator of special education, a school physician, a parent (who is not employed or under contract to the school district), and other such persons as the Board of Education or the Board of Trustees shall designate. Some of the responsibilities of the CSE members, in brief, include : review and evaluate at least annually the status of each child who is disabled and each child thought to be disabled who resides within the school district; make recommendations as to the advisability of continuation, modification, or termination of special class or program placements ; and periodically evaluate the appropriateness, services and facilities for children. One of the most important functions of the CSE is to work to formulate an Individualized Education Program (IEP) for each school- age child with a disability, residing in the school district which will establish and document the individual educational needs of the pupil, and provides an instructional management tool for meeting those needs. (See Individualized Education Program for more detailed information.) For more information, contact : Office for Education of Children with Handicapping Conditions A disorder in one or more of the processes of speech, hearing or language which interferes with the ability to speak, understand or use language. Such disorders may be developmental or acquired, may range from mild to severe, and may or may not be associated with a handicapping condition. Also see definition for SPEECH DISORDERS. For more information, contact : New York State Speech Language Hearing Association NIH/National Institute of Neurological and Communicative Disorders and Stroke (NINCDS)Office of Scientific and Health Reports A CR is a living situation in a single-family dwelling (or comparable structure) with common living areas (i.e. kitchen, living room) which offers persons who are disabled, shelter, meals, companionship and social and recreational activity in a homelike environment. A CR may be operated by a public, proprietary or voluntary non-profit agency, and funded through a variety of state, federal and local resources. Funding may be supplemented by resident contributions. Day-to-day operations, programming and long-term planning for the individuals living in the CR are the responsibility of the operating agency. Programs in the CR include instruction in activities for daily living. A primary daytime program outside the home must also be provided for every resident (see Day Treatment and Day Training for definitions) and can include a full range of medical and specialized therapeutic services; education programs; habilitation training; sheltered workshops and vocational training. For complete information on the regulations for establishing a community residence and eligibility for living in a CR, contact: NYS Association of Community Residence Administrators Office of Mental Retardation and Developmental Disabilities Office of Mental Health Community Residence Information Services Program (CRISP) The Community Residences Information Services Program (CRISP), established in 1975, is a project of the State Communities Aid Association (see term for definition). CRISP assists agencies in establishing residences for people who are disabled. CRISP's main objectives are: to plan and promote the orderly development of community residences; to build community support and acceptance for residential programs through community education; to develop positive interaction between community residences and members of the community; to address both the needs and rights of people who are disabled and the legitimate interests and concerns of the broader community ; and, to serve as liaison between state, county and local governments and the community. For more information, contact : CRISP Compassionate Friends is a nationwide support group for bereaved parents. There are chapters in many locations which provide opportunities to share ideas and support about coping with the death of a child. Pamphlets, a book list and a quarterly newsletter are available. For more information, contact : Compassionate Friends, Inc. Concepts of Independence, Inc. Concepts of Independence, Inc. maintains the Consumer Directed Personal Assistance Program, which enables independently self-directing people to manage their home care services. It also enables people who are non-independently self-directing individuals (people who need a surrogate to manage the home care responsibilities) such as children and people with dementia. Participants in the Concepts can independently manage a wide variety of home care services including services that would traditionally be provided by a registered nurse or a home health aid. Since 1995, the Consumer Directed Personal Assistance Program was identified as an official category of service by the State of New York and it should be available in each of the State's Counties. Concepts has grown from approximately 300 Consumers to our present census of more than 1100 Consumers who reside in New York City, Nassau, Westchester, Albany, Saratoga, Schenectady and Clinton Counties. Given our growth, Concepts has become a major element in the State's plan to provide service and reduce cost. We estimate that Concepts currently saves the Medicaid system more than $28 million annually. For more information, contact : Concepts of Independence, Inc. Consumer Complaints and Consumer Fraud In New York State all consumer complaints involving fraud or misleading advertising, home improvement contracts, television, radio and appliance repairs, travel agencies, rent security deposits, etc., are handled by the Office of the Attorney General, Department of Law, Consumer Frauds and Protection Bureau. For more information, contact : Office of the Attorney General The involuntary contractions (drawing together) of muscles resulting from abnormal cerebral (brain) stimulation which may occur with or without loss of consciousness. Types of convulsions are: clonic-- alternating contraction and relaxation of muscle groups ; and, tonic-- sustained rigidity. Council on Children and Families Established by Executive Law (Sec. 440) in 1977 to develop "more efficient organization and operation of the state / local, public / voluntary system of social, educational, mental health and other supportive and rehabilitative services to children and families... ", the New York State Council on Children and Families is designed to undertake activities consistent with the goals of reducing fragmentation and providing essential coordination of children and family services. These goals include: coordination of residential child care; promotion of effective preventive and early intervention services to maximize the healthy development of children, and minimize the need for long-term corrective or rehabilitative services; strengthening of families ; and, facilitating interagency information sharing and data management. Unlike most State agencies, the Council does not have direct responsibility for the operation of programs or for the provision of services. The Council is chaired by the Secretary to the Governor, with the commissioners and directors of all major state human service agencies as members. The specific agenda which governs the Council's activities originates in a variety of ways: by assignment from the Governor or the Chairman, by request from member agencies, the Division of the Budget, local service providers, the courts, or through requests from non-member agencies. Council involvement focuses on issues which could benefit from policy planning and analysis on an interagency level, and devotes much of its energy to achieving results through the neutral forum it can offer to encourage the discussion and resolution of interagency questions and disputes. The Council also funds and supports a statewide network of local self-help clearinghouses which provide information on and referral to local resources. For more information, contact : New York State Council on Children and Families A term used to describe physical alterations made to streetside curbs to enable people who are mobility impaired (i. e. people who use wheelchairs, crutches, walkers or other assistive walking devices) to ascend or descend from sidewalk to street. Curb cuts are usually ramp- like indentations in the sidewalk which are placed at corners and crossways. For specific architectural information, consult : American National Standard: Specifications for Making Buildings and Facilities Accessible to and Usable by Physically Handicapped People: Also called the "Wrinkley Skin Syndrome, " the characteristics of this rare genetic condition can include: generalized elastolysis (skin which hangs in loose folds in all areas), skeletal abnormalities, cardiac and pulmonary complications, and hernias (abnormal protrusion of an organ through a hole in the surrounding structures). An individual with cutis laxa may also have characteristics of another connective tissue disorder called Ehlers-Danlos Syndrome-- sometimes called cutis hyperelastic / hyperextensible skin (skin that stretches). This disorder is characterized by stretchable, fragile skin that tears and bruises easily, hyperextensible and unstable joints, dislocation of joints, club feet (congenital malformation) and dental irregularities. For more information, contact : Ehlers-Danlos National Foundation CF is an inherited disease of children, adolescents and young adults that affects the exocrine, or externally secreting, glands of the body. These glands discharge their secretions onto the skin (sweat glands), or into organs which connect to body openings, such as the lungs and intestines, either directly or through special ducts. In CF, the mucus- producing glands fail to produce normal, clear, free-flowing fluid. Instead, they secrete a thick, sticky mucus which tends to clog and block the ducts. This abnormal mucus accumulates in various parts of the body and interferes with vital functions, such as breathing and digestion. Cystic Fibrosis affects not only the mucus-secreting glands, but also the glands that produce sweat, as well as the salivary glands. As a result, the secretions of these glands usually contain an excessive amount of salt, resulting in a salty taste of the skin. Some of the other symptoms of CF which may at first be attributed to other conditions (i. e. chronic bronchitis, asthma, or a disorder of intestinal absorption called celiac disease) are: a lingering cough; wheezing; repeated respiratory infections (such as pneumonia or bronchitis); failure to grow or gain weight despite a good appetite ; bowel movements that are frequent, bulky, and foul-smelling; pain in the abdomen ; and, rectal prolapse (protruding of the rectum caused by large bowel movements). Legislation was passed in 1987 that provides for the cost of health care of persons with cystic fibrosis over the age of 21. Public Health Law. Chapter 851. For more information, contact : Northeastern New York Chapter of Cystic Fibrosis Foundation Cystic Fibrosis Foundation A daytime program designed to assist persons who are disabled in the acquisition of knowledge and skills that will enable them to improve their personal, social, and work-related skills. A day training program can be comprised of component programs such as adjustment training, activities for daily living skills training, work activities, pre- vocational training and simulated work situations. Work experiences provided by the program can be paid or unpaid. Day training usually offers fewer services than day treatment, focusing on clients who have progressed beyond problems with basic self-care. For more information, contact : New York State Office of Mental Retardation and Developmental Disabilities New York State Office of Mental Health A daytime program that conducts a clinical appraisal of a person's disability, and develops an individual treatment plan to help the client which may include physical therapy, occupational and speech therapy, nursing care, and vision or hearing services. This diagnostic service is offered along with active treatment and habilitative services to clients in need of a continuous and coordinated range of services, but who do not need 24-hour care and medical supervision. Each client's day treatment program varies depending on the nature of the services required, medical orientation, the person's level of disability, and the program goals which have been established for him or her. Day treatment programs can be operated by private agencies or a developmental center. For more information, contact : New York State Office of Mental Retardation and Developmental Disabilities New York State Office of Mental Health A hearing disorder is a reduced sensitivity to sounds, reduced hearing levels and / or damage to the auditory system (ear, inner ear and connective nerves to the brain) which interferes with the ability to develop, understand, produce or maintain speech or language usage. Hearing disorders include two major classifications: hard of hearing-- a mild to moderate reduction in the ability to hear which interferes with the ability to communicate; and deafness-- a hearing loss that is so severe that with or without an assistive hearing device, a person cannot always depend upon hearing to communicate with others. There are many types, causes, and degrees of severity of hearing disorders, as well as involvement with other disabilities (i. e. blind-deaf). Kinds of deafness include: congenital deafness-- deafness occurring at birth; nerve deafness or sensorineural hearing 1088-- results from damage to the delicate sensory nerves of the inner ear commonly occurring during the aging process and from sudden or extended exposure to loud noise; Meniere's Disease-- a disease of the inner ear which may include symptoms of fluctuating hearing loss, dizziness, tinnitus (ear noise including ringing, buzzing, clicking) and/or a feeling of fullness in the ear. One method used to help people with hearing impairments is the utilization of a hearing aid-- a device which amplifies sound. There are basically four types of hearing aids: post auricular (ear level) which fits behind the person's ear; "all-in-the-ear" which fits directly into the person's ear canal; a body aid worn in a pocket on the person's chest with a cord going to the ear; or, an eyeglass aid, which is connected to the eyeglasses. (For more information see Assistive Listening Devices and Sign Language.) For more information on hearing disorders, contact : New York State Speech-Language-Hearing Association Empire State Association of the Deaf National Information Center on Deafness (NICD) New York League for the Hard of Hearing Helen Keller National Center (Deaf and Blind Services) Deafness and Communicative Disorders Branch National Technical Institute for the Deaf Self-Help for Hard of Hearing People, Inc. American Athletic Association of the Deaf Children below the age of three who are deaf are eligible to receive educational services in accordance with Section 4204-a of the Education Law. These programs are designed to help children learn to communicate and to provide parents with training that will assist them in understanding and communicating with this child. In order to apply for services for a deaf infant, parents or legal guardians must file an application for tuition assistance with the State Education Department. Forms can be obtained by contacting the Early Childhood Direction Center (see term for definition), the local school district or the State Education Department. The form must be signed by the parents and includes an otological (structure, function, and diseases of the ear) and audiological (hearing) evaluation summary completed by a physician and audiologist (see term for definition) who must also sign the form. If the infant is found to be eligible, a referral will be made by the Commissioner of Education to the approved facility nearest to the child's residence and the parents and agency will be notified. Infants and their parents can then begin receiving services. For more information, contact : Early Childhood Direction Center Refers to the discharge of people from institutions for the purpose of changing the manner in which treatment is provided from being solely an institutionally-based system to one of community-based treatment and support services. Developmental Center (D.C.) A facility for the care and treatment of persons who are mentally retarded and developmentally disabled, operated by the Office of Mental Retardation and Developmental Disabilities (OMRDD) and certified as an Intermediate Care Facility (ICF) (see term for definition). For more information and a list of existing facilities, contact : New York State Office of Mental Retardation and Developmental Disabilities 44 Holland Avenue Albany, New York 12229 (518) 474-9894 Developmental Disabilities Chapter 978, Section 1.03(21 and 22), of the New York State Mental Hygiene Law specifically identifies a developmental disability as a disability of a person which : is attributable to mental retardation, cerebral palsy, epilepsy, neurological impairment or autism ; is attributable to any other condition found to be closely related to mental retardation because such condition results in impairment of general intellectual functioning or adaptive behavior similar to that of persons who are mentally retarded or requires treatment and services similar to those required for such persons; is attributable to dyslexia resulting from a disability described in the two previous qualifications; originates before such person attains age eighteen ; has continued or can be expected to continue indefinitely ; and, constitutes a substantial handicap to such person's ability to function normally i society. (See specific terms for more information on these disabilities.) For more information, contact : New York State Office of Mental Retardation and Developmental Disabilities (OMRDD) New York State Developmental Disabilities Planning Council Accreditation Council for Services for Mentally Retarded and Other Developmentally Disabled Persons Diabetes Mellitus is a chronic metabolic disorder (metabolism is the process by which the body takes the food we eat and breaks it down into elements and compounds that the cells can use to build and repair tissue, and to produce energy to sustain life) which adversely affects the body's ability to manufacture and utilize insulin, a hormone necessary for the conversion of food into energy. The body makes a substance called glucose from the sugars and starches [ carbohydrates ] that we eat. In order for the body to use glucose properly, it needs insulin. Insulin regulates the amount of glucose the body can use. If the glucose is not processed properly, too much remains in the blood stream, instead of being used by the cells to produce energy. The body is then starved of that energy. People who have diabetes are not able to produce enough insulin. There are two types of diabetes: Juvenile diabetes (Type I) the more severe form of the disease, can appear at any age, though most commonly from infancy to the late thirties. Juvenile diabetics must take daily insulin injections to stay Maturity-onset diabetes (Type II) usually begins in the middle or later years. Treatment is usually through diet and weight control, although oral medication or insulin may be required in some cases. Diabetes often leads to heart disease, stroke, kidney disease, gangrene, nerve damage and adult blindness. Symptoms of diabetes include: unusual thirst, frequent urination, abnormal hunger, sudden weight loss, skin disorders and infections, blurred vision, and unexplained weakness or fatigue. For more information, contact : Juvenile Diabetes Foundation International Disabled Children's Program (DCP) The New York State DCP was established to make it easier for parents to get the right kind of community services for their children who are disabled. Services provided by DCP through its regional offices include: information and referral to community-based programs, provision of appropriate data to those providing services for a child and follow-up support services. For more information, contact : New York State Disabled Children's Program The Division of Veterans' Affairs, which was created by the State Legislature, coordinates those programs and activities of State departments and agencies having a beneficial impact on the well-being of New York State veterans, their dependents and survivors. It also maintains liaison with state and community agencies concerned with providing services and facilities to veterans, members of the Armed Forces and their families. In addition, highly trained State Veteran Counselors, all of whom are veterans themselves, supply professional and personalized counseling on specific problems confronting veterans and the dependents and survivors of veterans. Special emphasis is placed on assisting the disabled veteran. For more information, contact: New York State Division of Veterans' Affairs State Veteran Counselor Founded by U. S. Senator Bob Dole, a World War II veteran who is disabled, Dole Foundation's primary goal is to help put private dollars into local, community-level job training and career advancement training programs for persons with disabilities-- either physical or mental. A national, non-profit organization, the Dole Foundation operates in three ways: as a direct grantmaker to promising local programs; as a conduit of information about such programs and their problem-solving approaches; and, as an advocate for increased support for these deserving projects. The Foundation's work is unique because it does not pre-empt or intrude upon organizations currently working with people with disabilities. Rather, it financially supports these activities, and through its advocacy programs, encourages even greater community support. Areas of interest include: promoting access to job opportunities in the marketplace, job development, recruitment, training, placement, post placement follow-up, career enhancement, application of entrepreneurial techniques to create new jobs or workplaces through new or expanded economic ventures, for-profit subsidiaries in existing eligible non- profit organizations, programs providing small business assistance to entrepreneurs who are disabled, and cooperative ventures by non-profits with for-profit corporations and investors. For more information, contact : The Dole Foundation Down Syndrome is a genetic birth defect which occurs in about one out of 800 births causing varying degrees of delayed development and effects all nationalities, ethnic and socio-economic groups. The individual with Down syndrome has an extra chromosome on the twenty-first chromosome thereby giving that person 47 instead of the normal 46 chromosomes. This condition may be associated with certain physical features, some degree of mental retardation and medical problems such as congenital heart disorders, low muscle tone and loose joints, hearing loss and susceptibility to respiratory infections. Individual mental abilities, behavior and developmental progress vary considerably. Because of this great variability, it is crucial that each individual is evaluated for placement into a school or work situation on the basis of his or her own needs and skills rather than as a category of handicapping condition. For more information, contact : Down Syndrome Northeast Regional Coalition Down Syndrome Program National Down Syndrome Congress NDSC National Down Syndrome Society Due process is a term that describes procedures which protect individual rights. In special education (see term for definition), this principle applies to the protection of students with handicapping conditions. The special education process in New York State includes procedural safeguards such as notice, consent, confidentiality of records, appointment of surrogate parents, impartial hearings and appeals to the commissioner. (These safeguards are detailed in Section 200. 5 of the Commissioner's Regulations, State Education Department.) Due process is also applicable to instances involving employment, rehabilitation services and other aspects of civil rights. For information on due process as it relates to a specific situation, contact: Bureau of Protection and Advocacy Office of Education for Children with Handicapping Conditions Office of Vocational Rehabilitation State Division of Human Rights Dyslexia (or Learning Disabilities) A term used to describe those children and adults with average or above average measured intelligence who have severe difficulty in reading, writing and spelling. One of the more obvious characteristics of Dyslexia is severe difficulty in the identification (naming) of printed words or symbols which impairs all other aspects of reading, such as comprehension. For more information, contact : Child Research and Study Center New York Association for the Learning Disabled Dystonia is a disorder of brain function in which muscles undergo involuntary and sometimes painful contractions that induce abnormal postures and, subsequently, loss of control over one muscle, a group of muscles, or the entire body musculature. The involuntary contractions range in severity from mild, irritating movements to powerful, sustained movements. In children, the legs, arms and back are more often affected and in adults, the face and neck. Dystonia is a disorder of movement, which need not involve any other functions of the brain. Thus, intellect, personality, memory, emotions, sight, hearing, sensation and sexual function are quite normal in patients with dystonia. The more prevalent forms of dystonia are either inherited by one or more defective genes or arise spontaneously due to unknown causes. For more information, contact : Dystonia Medical Research Foundation
|
|||||||||||||||||||||||||||||
|
 |
