Cornucopia of Disability Information

Coming to Terms with Disabilities: National -- Public

CODI Directory

CODI Archives

Contact Webmaster

Back to Coming to Terms with Disabilities

 


National Information Center for Handicapped Children and Youth

Provides information about resources for persons who are handicappedand chronically ill.

For more information, contact :

National Information Center for Handicapped Children and Youth
P. O. Box 1492
Washington, D. C. 20013
(202) 522-3332

National Self-Help Clearinghouse

The Clearinghouse maintains an up-to-date listing of mutual-aid organizations throughout the Nation.

For more information, contact :

National Self-Help Clearinghouse
33 West 42nd Street, Room 1227
New York, New York 10036
(212) 840-1258

National Technology Center (AFB)

The National Technology Center of the American Foundation for the Blind has been established to provide a resource for persons who are blind or visually impaired, professionals in education and rehabilitation, employers, researchers, and developers and manufacturers of aids and devices.

The Center has three components: National Technology Data Base; Evaluations; Research and Development. Services offered include: Research and Development-- designs and develops aids and devices to meet the present and future needs of blind and visually impaired people at home, school, work and leisure ;

Evaluation Agency-- evaluates new and existing devices and reports results, works with manufacturers and consumers to assist in the design of new devices ; and, Technology Database-- provides information on consumer products for blind and visually impaired people, available courses at training centers, funding sources, names and comments of users of adapted equipment, and previous evaluations of devices.

For more information, contact :

American Foundation for the Blind
15 West 16th Street
New York, New York 10011
(212) 620-2080

Neurofibromatosis

Neurofibromatosis, also known as Von Recklinghausen's disease, is a usually progressive genetic disorder characterized by the abnormal growth of body tissue, primarily nerve tissue. There are a variety of signs, including initially the appearance of light brown spots on the skin (called "cafe-au-lait" spots) and later the development of multiple tumors on or under the skin. Neurofibromatosis lesions ( changes in body tissue) may occur in any part of the body. The tumors can lead to disfigurement, deafness, blindness, the dysfunction of many organs, deformity of limbs, learning disabilities, epilepsy, and mental retardation. John Merrick, a nineteenth-century Englishman whose life was depicted in the book, play, and film entitled "The Elephant Man, " had an unusually severe form of the condition. Neurofibromatosis may be inherited from a parent who has the disorder, or it may result from a spontaneous change in the developing fetus.

For more information, contact :

National Neurofibromatosis Foundation
70 West 40th Street, 4th Floor
New York, New York 10018
(212) 869-9034

Northeastern New York Chapter/ National Neurofibromatosis Foundation
Box 117
Gallupville, New York 12073
(518) 482-1883

Neurological Impairments

A general term which refers to diseases I disorders of the nervous system which can impair the normal functioning of the brain and the nervous system in the following ways : paralysis or physical disability, inability to receive and/or give communication, hearing impairment, vision loss, seizures, learning disabilities, involuntary movements and / or vocalization, hyperactivity and mental retardation. Disabilities included under this umbrella term are : Head Injury, Learning Disabilities, Neurofibromatosis, Prader-Willi, Spina Bifida, Tourette Syndrome, and Tuberous Sclerosis. (See specific terms for definitions.)

For more information, contact :

New York Association for the Learning Disabled
155 Washington Avenue
Albany, New York 12210
(518) 436-4633

Neuromuscular Diseases

This term refers to diseases which affect the nerves and muscles. These diseases include those of the peripheral nervous system (see Friedreich' s Ataxia and Charcot-Marie-Tooth disease); metabolic diseases of the muscle which affect voluntary muscles and are characterized by inherited chemical deficiencies; diseases of the neuromuscular junction (see Myasthenia Gravis); spinal muscular atrophies which are characterized by degeneration of the motor nerve cells in the spinal cord (see "Lou Gehrig's Disease" /Amyotrophic Lateral Sclerosis); and the muscle destroying disorders called muscular dystrophies (see Muscular Dystrophy).

New York Easter Seal Society

The Easter Seal Society was founded in 1919 as a non-profit health care agency providing direct services to people with disabilities. The New York Easter Seal Society, established over 60 years ago, is part of a national network of 820 state and local Easter Seal Societies. Its purpose is to provide, through the collaborative efforts of volunteers and staff, direct and indirect services to persons with disabilities due to illness, accident or birth defects, and their families in order to maximize independence. Informational programs are directed at the general public to increase awareness and promote positive attitudes toward the abilities and potential of people with disabilities. Direct services (i. e. advocacy, referral, and programs) are provided to persons with disabilities and their families to enable the individual to maintain maximum physical, emotional, educational and vocational rehabilitation. Public health education services are provided to organizations, agencies, self-help groups, professionals and the community in order to provide information, eliminate environmental and attitudinal barriers, and recognize the capabilities of persons who are disabled. Services are provided to people with Stroke, Cerebral Palsy, Cystic Fibrosis, Accidents, Hearing Loss, Arthritis, Speech Disorders, Spina Bifida, Geriatric Problems, Scoliosis, Muscular Dystrophy, Multiple Sclerosis, Mental Retardation, Epilepsy, Visual Problems, Down Syndrome, Amputation, Heart Diseases, Poliomyelitis, Diabetes, Meningitis, Parkinsonism, Cleft Lip, Cleft Palate and many other conditions.

For more information, contact :

New York Easter Seal Society
845 Central Avenue
Albany, New York 12206
(518) 438-8785

New York Relay Service

The New York Relay Service is a system which allows telephone communication between users of telecommunication devices for the deaf (TDDs) and hearing individuals anywhere within New York State. This is accomplished over standard telephone lines with the aid of specially trained communication assistants (CAs) who act as relays by reading verbatim, messages of TDD origin to a hearing individual and by typing messages to the TDD of a person who is hearing impaired. All conversations are handled in strict confidence.

To use the system:
A TDD user calls (800) 662-1220. The person gives the name and number of the person with whom they wish to speak and the CA places the call and acts as a relay between the two parties.

A hearing individual calls (800) 421-1220. The person gives the name and TDD number of the person with whom they wish to speak and the CA places the call and acts as a relay between the two parties. All local calls are charged at regular rates, as though they were not routed through the relay service. TDD users will receive a 50% discount on long distance calls.

The New York Relay service is available 24 hours a day.

For further information, contact :

New York Relay Service
300 Clifton Corporate Park
Clifton Park, New York 12065-3819
(800) 332-1124 (TDD and regular)

New York State Association for Retarded Children, Inc.

This Association is made up of sixty-five local chapters throughout New York State. The members consist of parents and friends of persons with mental retardation. NYSARC is a major provider of services including pre-school, residential, workshop and day treatment programs, to name but a few. The organization also serves in the role of an advocate, assisting individuals and their families to ensure that they obtain the necessary services in order to live happy and productive lives.

For more information, contact :

New York State Association for Retarded Children Inc.
393 Delaware Avenue
Delmar, New York 12054
(518) 439-8311

New York State Association of Rehabilitation Facilities (NYSARF)

The purpose of the New York State Association of Rehabilitation Facilities (NYSARF) is the development, provision and expansion of high-quality, efficiently delivered services to meet the needs of people with disabilities. Rehabilitation facilities, through NYSARF and in concert with other organizations, pursue the removal of physical, economic and social barriers and seek to foster a clear understanding of the role of rehabilitation facilities by the public and government, so that people with disabilities can achieve full and productive lives.

For more information, contact :

New York State Association of Rehabilitation Facilities
155 Washington Avenue Suite 305
Albany, New York 12210
(518) 449-2976

New York State Games for the Physically Challenged

A new program of open competition and fitness workshops for young people with physical disabilities (i. e. cerebral palsy, blind, deaf, spinal cord injured, and those who are amputees). Athletes ages 11 to 18 years of age throughout the State are invited to take part ; however, participation is limited to 250 people on a first come, first served basis.

For more information, contact :

New York State Games for the Physically Challenged
P. O. Box 247
Belmont Lake State Park
Babylon, New York 11702
516 (669-1000) Extension 247

Non-Driver Identification

Chapter 295 of the Laws of 1983 allowed the issuance of non-driver identification cards by the New York State Department of Motor Vehicles to persons over age 18 who do not have a driver's license. The New York State Non-Driver Identification Card is available for $5. 50, and is valid for four years. Each applicant's photograph, current address, date of birth, and non-driver identification number are laminated to a security pattern background. To qualify for non- driver identification, each applicant must reside in New York State, be at least 18 years old, provide two proofs of identity, along with proof of date of birth (the two proofs of identity must show the applicant's signature and current address, but the signature and address do not have to appear on the same document, and the proof of date of birth may appear on the other forms of identity). For more information, including acceptable proofs of identity, contact your local Department of Motor Vehicles or:

New York State Department of Motor Vehicles
Office of Public Information
Empire State Plaza
Albany, New York 12228
(518) 474-0877

Non-Profit/Not-For-Profit/Voluntary Agency

In general, as applied to an agency, institution or organization, a term meaning a facility or service which is owned and operated by one or more corporations or associations, in which no part of the net earnings may accrue to the benefit of any private shareholder or individual.

Nursing Home

As defined in Section 2801, New York State Public Health Law, ths is a facility providing nursing care to persons who are sick, infirm, disabled or who are convalescing in addition to board, lodging and health-related services (see term for definition).

Occupational Therapy

A skilled profession which assesses and treats persons who are physically, developmentally and / or emotionally disabled by using selected purposeful activities to promote development or return of function. Occupational therapists are trained to build or rehabilitate the basic skills involved in everyday living by developing treatment activities and by adapting materials to suit the special needs of the individual who is disabled. They focus on fine motor activities, especially the use of hands and fingers, on coordination of movement, and on self-help skills. Occupational therapists work in hospitals, rehabilitation centers, nursing homes, public and private schools and home health agencies. They also act as consultants to health care facilities, and an increasing number have private practices.

For more information contact:

American Occupational Therapy Association
1383 Piccard Drive
P.O. Box 1725
Rockville, Maryland 20850
(301) 948-9626

Ophthalmologist

A physician who specializes in the diagnosis of the eye in relation to its structure, function and diseases. An ophthalmologist can perform surgery and dispense needed medications. (See "Optometrist" and "Optician" for related information.)

Optician

A maker or dealer in optical items (i. e. lenses) and instruments; can grind spectacle lenses to prescription, and dispense glasses. (See "Ophthalmologist" and "Optometrist" for related information.)

Optometrist

A specialist who examines the eye for defects or faults of refraction to measure visual acuity, and who can prescribe correctional lenses or exercises, but not drugs or surgery. (See "Ophthalmologist" and "Optician" for related information.)

Out-patient

A term which refers to an individual who is not hospitalized, but who visits a clinic, laboratory, emergency facilities, or dispensary for diagnosis and/or treatment. Services may include x-ray, blood work, oral surgery, urinalysis, physical therapy (see term for definition), and psychotherapy (see term for definition).

Outreach

The provision of services or activities, beyond current or usual limits, to identify, treat and integrate into the services system persons who may "fall between the cracks, " or who may be unaware or unable to access available disability services.

Paraplegia

A term meaning total or partial paralysis of both lower limbs. Paraplegia is caused by injury or disease involving the spinal cord. Below the level of the damage, there is locomotor paralysis and sensory loss. Bladder and bowel function may be affected.

Paraprofessional

A term used to describe a trained aide/assistant who assists a professional person (i.e. teacher's aide, physician's assistant).

Paratransit

A term used to describe a system of transportation comprised of accessible, lift-equipped buses, vans, and specially designed vehicles which can provide door-to-door service for individuals with disabilities who do not drive and cannot utilize existing mass transportation facilities (i. e. subways, buses, trains) due to inaccessibility of those systems or geographic unavailability. In some areas, paratransit systems supplement general public transportation, while in other areas paratransit is the sole means of transportation for persons who are disabled.

(See Accessible Transportation for more information.)

Parkinson's Disease

A chronic progressive nervous disease of later life that can result in tremor and weakness of resting muscles, and jerky movements. This disease involves the progressive loss of brain cells in an area of the brain called the basal ganglia (at the base of the brain) which is responsible for balancing the activity of opposing muscles; and a progressive deficiency of a chemical called dopamine, which transmits messages from muscle cells to the brain.

For more information, contact :

American Parkinson Disease Association
116 John Street
New York, New York 10038
(212) 732-9550

Parkinson's Disease Foundation
William Black Medical Research Building
650 West 168th Street
New York, New York 10032
(212) 923-4700

Part 100 of the New York State Education Regulations

This Section of regulations explains, in detail, how the needs of all students including those with handicapping conditions must be met through general education regulations. Revised in September of 1985, they assure equal opportunity for students with handicapping conditions and full access to the range of programs and services provided through the public school system in this State.

Included in these regulations is a complete list of what must be provided in both elementary and secondary education in regards to testing, remedial instruction, second language requirements as well as mandated courses such as patriotism, health education, highway and traffic safety and instruction in fire drills and fire prevention. Also included in Part 100 is the provision for guidance programs, technology education, home and career skills ; nondiscrimination in curricular and extra-curricular activities; and requirements for all types of high school diplomas including the IEP diploma. (See definition.)

For more information, contact :

Office for Education of Children with Handicapping Conditions
State Education Department
Room 1073, Education Annex
Albany, New York 12234
(518) 474-5548

Part 200 of the New York State Education Regulations

This Section of the Rules and Regulations of the Commissioner of Education explains in detail what must be done to implement the educational responsibilities of each local school district and the State Education Department regarding the provision of services for children with handicapping conditions as set forth in Article 89 of New York State Education Law (see term for more information). Part 200 includes the definitions of all terms as they apply educationally to children with disabilities (i. e. specific disabilities, program and special services terminology, testing modes, Board of Education and Committee on Special Education responsibilities); describes the process of setting up an individual educational program from identification to assessment to the specific services rendered, and reevaluation of those services to insure that the child's needs are being met; defines program standards; explains due process; and explains the financial aspects for providing services.

For more information contact:

Office for Education of Children with Handicapping Conditions
State Education Department
Room 1073, Education Building Annex
Albany, New York 12234
(518) 474-5548

Phenylketonuria (PKU)

An inherited disease that, if untreated, causes mental retardation. It affects the way the body is able to process the food it takes in - the child cannot metabolize part of the protein (phenylalanine), which then collects in the blood stream. The abnormal build-up of phenylalanine can prevent the brain from developing as it should.

Each newborn infant must be tested for PKU unless medically contraindicated, in which case, the tests shall be performed as soon as the medical condition of the infant permits such testing. When an infant is born outside of an institution, it becomes the duty of the person required by Section 4130 of the Public Health Law to register the birth of a child to ensure that the tests are administered not later than the 14th day of life unless medically contraindicated, in which case, the tests must be performed as soon as the medical condition of the infant permits testing

For more information, contact :

New York State Department of Health
Wadsworth Center for Laboratories and Research
Empire State Plaza
Corning Tower
Albany, New York 12201
(518) 474-7592

March of Dimes Birth Defects Foundation
56 Lafayette Avenue
White Plains, New York 10603
(914) 428-7100

Physiatrist

A medical doctor specializing in physical medicine (i. e. physical therapy) and rehabilitation. (See terms for definition.)

Physically Handicapped Children's Program

Handicapped Children's Program (as it is known in New York State) is a joint Federal/ State program to provide medical and related services to children with disabilities from birth to age 21. All states must provide medical diagnosis and evaluation for all children. The range and cost of additional treatment or hospital care services vary from state to state.

For information regarding this program contact local health departments or:

New York State Health Department
Bureau of Children and Adolescent Health
Empire State Plaza
Corning Tower, Room 765
Albany, New York 12237
(518) 474-2033

Physical Therapy

A treatment done by physical means. Physical therapists are concerned with the promotion of health, with prevention of physical disabilities and with the rehabilitation of persons who are disabled by pain, disease or injury. Physical therapy involves the evaluation of patients and the treatment of same through the use of physically therapeutic measures as opposed to medicines, surgery or radiation. American Physical Therapy Association (APTA)

New York Chapter
200 South Service Road
Roslyn Heights, New York 11577
(516) 484-0095

Physician's Assistant (PA)

A specially trained, licensed individual who performs tasks which might otherwise be performed by physicians themselves. They work under the direction of a supervising physician.

Polio (Infantile Paralysis)

Before vaccines were made available to the public in 1955, polio was a common disease caused by a virus which could result in partial or total paralysis as the virus attacked the nerves which send messages to the muscles and limbs. Although, due to the vaccine, polio is no longer a major health problem, individuals who had polio 30 or 40 years ago have recently found that muscles are becoming weaker and shrinking or atrophied (Post-Polio Muscle Atrophy) causing difficulty in breathing, and pain in muscles and joints.

For more information, contact :

March of Dimes
Birth Defects Foundation
56 Lafayette Avenue
White Plains, New York 10603
(914) 428-7100

March of Dimes
Birth Defects Foundation
Northeastern New York Chapter
1202 Troy-Schenectady Road
Latham, New York 12110
(518) 783-9363

Post-Polio Support Group
c /o Capital District Easter Seal Society
845 Central Avenue Albany, New York 12206
(518) 438-8785

Prader-Willi Syndrome

Prader-Willi syndrome is a birth defect of unknown origin; it is not inherited, nor is it caused by brain damage or prenatal trauma. A dysfunction of the central nervous system, this disorder develops in two stages, beginning with certain characteristics detectable during pregnancy. Infants display characteristics which may include: reduced movement in the womb, low birth weight, hypotonia (poor muscle tone), lack of ability to control head and limbs, weak cry, poor sucking reflex, poor appetite, ability to hold head erect, delay in sitting, walking, talking and mental retardation. Between the ages of 1 and 4, an uncontrollable appetite develops.

In adults, significant characteristics may include : short stature (average height of five feet); small, tapering, puffylooking hands and feet; lack of muscle tone; underdeveloped genitals or incomplete sexual development; strabismus (wandering or crossed eyes); stubbornness or temper tantrums; picking at sores or insect bites; and diminished sense of pain.

Persons with Prader-Willi have an on-going need for multidisciplinary case management, including the following: nutritional services, pediatric or family medical services, endocrinological services, genetic counseling, psychological or psychiatric services, and occupational and physical therapy.

For more information, contact :

The Prader-Willi Syndrome Association (USA)
5700 Midnight Pass Rd.
Sarasota, Florida USA
Tel: (800) 926-4797
Tel: (941) 312-0400
Fax: (941) 312-0142
http://www.pwsausa.org
pwsausa@aol.com

President's Committee on Employment of the Handicapped (PCEH)

Established by Executive Order in 1949, The President's Committee on Employment of the Handicapped (PCEH) is administratively part of the United States Department of Labor. The Committee is charged with facilitating the development of maximum employment opportunities for persons who are mentally or physically handicapped. In addition, PCEH is to supply information to employers, labor unions, and national and international organizations regarding the hiring of people with disabilities. To meet the latter objective, PCEH publishes innumerable informational pamphlets (independently or in conjunction with various disability interest groups or the U. S. Census Bureau) which provide insight, guidance, and statistical and/or technical data relating to employment of adults, youth and minorities including women, Veterans, Blacks and Hispanics. The President's Committee also conducts public education on the issue of employment; promotes cooperation between disabled organizations and agencies ; and enlists the support of Federal, State and local officials, governor's and local committees on employment of the handicapped, professional organizations, organized labor and those interested in addressing all aspects of the issue of employment of individuals with disabilities.

For more information and a publications list, contact :

The President's Committee on Employment of the Handicapped
1111 20th Street, N.W., Suite 636
Washington, D. C. 20036
(202) 376-6200

Primary Care

Basic health services which are given in a physician's office, health center, or clinic-type setting. Primary care should provide the essential and continuing contact between the individual and the health care setting.

Private Proprietary Convalescent Home

As defined in Section 758, New York State Executive Law, this is a private facility providing lodging, board, bedside and hygienic care, but not nursing or medical care.

Private Proprietary Homes for Adults

As defined in Section 758, New York State Executive Law, this means a privately owned facility operated for the purpose of providing suitable care for adults who though not requiring medical or nursing care because of age or disability, require lodging, board and services of attendants to assure their safety and comfort and to enable them to be bathed, dressed, fed or moved about.

Proprietary or For-Profit

A facility or service operated on a for-profit basis (i. e. nursing homes or health related facilities operated as an income business by physicians or business corporations).

Psychiatrist

A physician, trained in psychotherapy (see term for definition), who specializes in the diagnosis and treatment of emotional problems and mental disorders.

Psychoanalysis

A specialized branch of psychiatry (medical study devoted to the diagnosis and treatment of mental illness) which uses self-examination of a person's past / forgotten emotional experiences to help readjust attitudes towards those experiences, and cure his / her neurosis (a disorder arising from stress and anxieties in a person's environment).

Psychologist

Psychologists are trained in the assessment and treatment of people with emotional, interpersonal or behavioral problems. They work in a variety of settings including schools, clinics, mental health centers and hospitals. School psychologists specialize in counseling school children and their families, and work with teachers and other school staff to improve the child's ability to function in a school setting. Psychological testing done in schools is done only by psychologists. A behavioral psychologist specializes in the objective observation and analysis of behavior and in developing behavior management programs.

Psychotherapy

A method of treating mental/ emotional/ nervous disorders, by mental (psychological) rather than by physical means. Treatment can include discussion, explanation, reassurance and psychoanalysis (see term for definition).

Public Hearings

A public forum held locally, statewide or nationally to invite citizens and interested individuals to express their thoughts and feelings on a certain issue. For example, statewide public hearings held periodically by the New York State Senate Select Committee on the Disabled, either alone or in conjunction with a pertinent Committee (i. e. the Senate Committee on Education), to enable people to express their thoughts on a wide range of topics effecting people with disabilities including transportation, housing, education, employment and equal rights.

Public Law 94-142 (Education for All Handicapped Children Act of 1975)

A law enacted by the 94th Congress in 1975, to assure that all children with handicapping conditions, thru the age of twenty-one, have available to them, a free appropriate public education which emphasizes special education and related services to meet their individual needs. Requirements/components of this law include, but are not limited to: Individualized Education Plan (IEP)-- a written statement for each child, developed by a qualified representative of the local education agency in conjunction with child's parents, which describes his/her education program (see specific term for definition); related services-- support services required by a child to enable him/her to benefit from the individualized education program including physical and occupational therapy, speech pathology and audiology, and adaptive physical education / recreation; due process hearing-- the legal right of a parent to request and have a formal hearing with their school district when avenues of communication have broken down or problems have arisen in their child's special education program which cannot be agreed upon; and least restrictive environment (see specific term for definition).

MOST POPULAR DOCUMENTS:   ADA Accessibility Guidelines | Disabled Students in Higher Education | Caregiver Stress: Causes & Treatment | History of Disabilities and Social Problems | Disability Statistics | Using Knowledge and Technology
This site is maintained by Jennifer Weir, Disability Services at Texas A&M University -- Corpus Christi