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Early Childhood Direction Center


   The Early Childhood Direction Center is funded by the New York State
   Education Department to provide free and confidential regional
   assistance in finding appropriate services for children below the age of
   five who have such problems as hearing, seeing, eating, talking,
   following directions, walking, standing, or getting along with others.
   The Direction Center can assist parents in obtaining medical assistance,
   developmental screening, educational programs, respite / babysitting,
   advocacy services, legal aid, transportation, therapy, counseling and
   financial aid. 


For more information, contact : 


		Early Childhood Direction Center 
		New York State Education Department
		Division of Program Development
		Room 1071, Education Building Annex
		Albany, New York 12234
		(518) 474-5804


Early Intervention


   This is a term which in general means identifying and effecting
   treatment for a problem as early as possible. Educationally it means
   that children with disabilities or handicapping conditions of some sort
   are identified at an early age and actions are taken to help these
   children as soon as identification occurs. Early intervention can range
   from prescribing glasses for a two year old (years before the child
   needs to use the glasses for school work) to developing a daily physical
   therapy program for a three month old child with cerebral palsy so the
   child does not begin to lose the potential use of his arms and legs as
   muscles develop unevenly. 

   In an educational setting, early intervention can mean offering special
   education to children as soon as the child is diagnosed. These programs
   offer a high staff ratio with specialists trained in a variety of areas
   ranging from special education to speech and physical therapy. (See
   terms for definitions.) They often include components to train parents
   through parent seminars and self-help groups to build on the work done
   in the school. In cases where the children have physical handicaps or
   serious health problems, the programs frequently tie in with hospitals
   or health centers whose professionals work with the teaching staff to
   minimize the physical limitations of students while maximizing their
   growth potential. 


Early Periodic Screening, Diagnosis and Treatment Program (EPSDT)


   The EPSDT program screens children from poor families to identify
   whether health care or related services may be necessary. Children
   receiving State Aid to Families with Dependent Children benefits, and
   children whose parents or guardians are receiving Medicaid, and / or
   local or state public assistance benefits are eligible for EPSDT. EPSDT
   programs vary from state to state and are administered by either state
   public assistance (welfare) or health departments. For more information
   on EPSDT contact your physician, local or state health department or
   public assistance office. 


Eastern Paralyzed Veteran Association


   An organization made up of veterans with spinal cord injuries, whose
   goal it is to insure that members are successfully, independently
   integrated into society, and enjoy the opportunities afforded all
   citizens. To meet this goal, EPVA's activities include: to seek and
   disperse information regarding rehabilitation, medical advances and
   veterans benefits ; to advocate for accessibility in public buildings,
   homes, and mass transportation ; and to promote laws and policies which
   benefit members of both the disabled and veteran communities. 


For more information, contact :


		Eastern Paralyzed Veterans Association 
		432 Park Avenue South 
		New York, New York 10016 
		(212) 686-6770
		
		
Educationally Handicapped/Educationally Disabled


   A child who has a disability which affects his / her educational
   performance is adversely affected by a visual, hearing or motor
   impairment ; mental retardation; emotional disturbance ; autism ; or
   learning disability.


For more information, contact :


Your local school district, also


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

Ehlers-Danlos Syndrome


See Cutis Laxa Syndrome.


Emergency Assistance Aid (EAA)


   Under New York State Social Services Law, Title VII, there is financial
   aid given to Supplemental Security Income (SSI) (see term for
   definition) recipients who have an emergency need that cannot be met by
   the regular monthly benefit and which, if not met, would endanger the
   health, safety and welfare of the applicant. Such emergencies include
   lost or stolen checks, fire, etc. Such aid can be given only once per
   year. For more information, contact the local Social Services Office. 



Emotionally Disturbed/Emotionally Handicapped


   Educationally, according to Part 200 (Handicapped Children) of the
   Regulations of the Commissioner of Education, this term refers to a
   pupil who has an inability to learn which cannot be explained by
   intellectual, sensory or health factors, and who exhibits one or more of
   the following characteristics to a marked degree and over a long period
   of time: an inability to build or maintain satisfactory interpersonal
   relationships with peers and teachers; inappropriate types of behavior
   or feelings under normal circumstances; a generally pervasive mood of
   unhappiness or depression; or a tendency to develop physical symptoms or
   fears associated with personal or school problems. The term does not
   include socially maladjusted pupils unless it is determined that they are
   emotionally disturbed.

For more information, contact:


		Office of Education of Children with 
		Handicapping Conditions
		State Education Department, 10th Floor
		Albany, New York 12205
		(518) 474-5548
		
		New York State Office of Mental Health
		44 Holland Avenue
		Albany, New York 12229
		(518) 474-2568  General
		(518) 474-4403  Commissioner
		(518) 447-9650 Capital District Regional Office
		(315) 428-4542 Central NY Regional Office
		(914) 452-1540 Hudson River Regional Office
		(516) 434-5311 Long Island Regional Office
		(718) 262-4981 New York City Regional Office
		(716) 885-5014 Western New York Regional Office
		
		Alliance for the Mentally Ill of New York State (AMI)
		P.O. Box 746
		New Paltz, New York 12561
		(914) 255-5134
		(212) 242-7988
		
		Mental Health Association in New York State, Inc.
		75 New Scotland Avenue
		Albany, New York 12208
		(518) 434-0439
		
		Federation of Parents Organizations for the
		New York State Mental Institutions, Inc.
		2175 Wantagh Avenue
		Wantagh, New York, 11793


Emphysema

   Emphasema is a non-revesible pulmonary disease causing extreme shortness 
   of breath and eventual death. In this disease, the broncial tubes of the
   lungs become blocked with mucus plugs and infection, inhibiting passage of
   air into and out of the aveoli (air sacs). The disease is characterized by
   destruction of these sacs which lose their elasticity, swell and
   rupture thereby interfering with the exchange of oxygen and carbon dioxide
   in the breathing process. Emphysema affects more than 2 million persons
   throughout the United States and is third among diseases for which
   Social Security provides disability benefits. Cigarette smoking is a
   contributing factor. 


For more information, contact : 


		American Lung Association of New York State
		8 Mountain View Avenue
		Albany, New York 12205
		(518) 459-4197
		
		
Encephalitis


   This term means "inflammation of the brain. " There are many types, most
   of which are due to virus infections, and which can damage one or many
   parts of the brain. It can be a frequent cause of learning and behavior
   disorders because of the resultant brain dysfunctioning. 


Epilepsy


   Epilepsy is a common neurological condition which is sometimes called a
   seizure disorder. Although the cause is unknown in approximately half of
   the cases, some known causes include : problems before birth, such as
   infections, anoxia (lack of oxygen to the brain), and trauma (injury to
   the fetus) ; problems during birth, such as trauma, anoxia and
   infections ; head injuries; infectious diseases (meningitis,
   encephalitis, or brain abscess); toxic factors, such as lead or mercury
   poisoning; tumors of the brain ; inherited or degenerative diseases,
   such as phenylketonuria (PKU) (see term for definition); and strokes.


   Epilepsy is characterized by brief, temporary changes in the normal
   functioning of the brain's electrical system. These brief malfunctions
   mean that more than the usual amount of electrical energy passes between
   cells. This sudden overload may stay in just one small area of the
   brain, or it may swamp the whole system. The type of seizure activity
   indicates the area of the brain in which the overload occurs. 


   The most common seizure types include: 


   Absence seizure (petit mal)-- a few seconds of loss of consciousness,
   during which there may be staring, eye blinking or facial twitching; 


   generalized tonic-clonic seizure (grand mal)-- Generalized convulsive
   seizure (effecting the whole body) lasting one to three minutes in
   which the person falls and becomes unconscious, the body stiffens, the
   muscles begin alternate periods of spasm and relaxation, the person may
   pass urine and/or bite the tongue or stop breathing, and when the person
   regains consciousness may be confused, sleepy, fatigued, have a
   headache, speech difficulty, or weakness of the limbs ; 


   complex partial seizure (psychomotor or temporal lobe)-- usually not
   remembered by the person afterwards and often characterized by
   purposeless activity. This seizure varies greatly from person to person
   with symptoms which may include a glassy stare, no or confused response,
   moving about aimlessly, lip-smacking or chewing motions, fidgeting with
   clothes, appearing drunk or drugged or psychotic, abnormalities in
   thinking, and unusual sensory perceptions. 


   Some people can experience a seizure and not have epilepsy. For example,
   many children have convulsions from fevers. 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 the person has epilepsy. 


For more information, contact : 


		New York Epilepsy Association
		Suite 1007
		60 Madison Avenue
		New York, New York 10010
		(212) 684-3344
		

Equipment Loan Fund


   Established by Chapter 609, the Fund is to provide low interest loans
   for people with disabilities to use for the purchase or replacement of
   essential equipment for daily living or vocational functioning following
   rehabilitation including, but not limited to : ramps, wheelchairs,
   wheelchair van lifts, prosthesis, telecommunication devices for the deaf
   and hearing impaired, and devices which enable persons who are blind or
   visually impaired to discern printed materials. The Fund is administered
   under the auspices of the Commissioner of the Department of Social
   Services (DSS) and the State Comptroller. Loans will be made on the
   basis of need, and will not exceed $2, 000. 00 per applicant. 


For more information, contact: 


		New York State Department of Social Services
		40 North Pearl Street
		Albany, New York 12243
		(518) 474-9516
		
		
Executive Order 6


   In 1983, Executive Order 6 was signed into law by the Governor
   (expanding previous Executive Orders on the same subject by different
   Governors) to assign responsibilities to the State Department of Civil
   Service and certain State agencies for insuring equal employment
   opportunities for minorities, women, persons who are disabled and
   Vietnam era veterans in State government, and to establish the
   Governor's Executive Committee for affirmative action (a positive
   effort to employ persons who previously may have been left out of the
   workforce, including people with disabilities). 


For more information, contact : 


		New York State Department of Civil Service 
		Civil Service Building 
		State Office Campus 
		Washington Avenue 
		Albany, New York 12239 
		(518) 457-2487
		
		Office of the Governor
		State Capitol Building
		Albany, New York 12224
		(518) 474-8390
		

Family Care Homes


   Family Care Homes provide a home living environment with the companion-
   ship, guidance, support and the personal attention of a family setting
   for adult clients of the Office of Mental Retardation and Developmental
   Disabilities or the Office of Mental Health. Providers of family care
   and their homes must meet rigorous State standards. Financial support
   for the client's room and board and in-home services are provided
   through Supplemental Security Income (SSI) (see term for definition),
   the State and Federal Medicaid Programs (see term for definition).
   Mental Health and/or Developmental Disability Services Offices are
   responsible for arranging treatment and support services in the
   community and for follow-up. 


For more information, contact :


		New York State Office of Mental Health
		44 Holland Avenue
		Albany, New York 12229
		(518) 474-2568
		(914) 452-1540  Capital District Regional Office
		(315) 428-4542  Central New York Regional Office
		(914) 452-1540  Hudson River Regional Office
		(516) 434-5311  Long Island Regional Office
		(718) 262-4981  New York City Regional Office
		(716) 885-5014  Western New York Regional Office
		
		New York State Office of Mental Retardation & 
		Developmental Disabilities 
		44 Holland Avenue 
		Albany, New York 12229 
		(518) 474-6601
		
		
Family Court Petitioning


   In accordance with Section 236 of the Family Court Act and Section 4406
   of the Education Law, parents of children with disabilities below the
   age of five may petition the Family Court in their county of residence
   for the costs of tuition, transportation and maintenance for special
   education programs for the school year and summer months. Children
   handicapped because of mental, physical or emotional reasons as defined
   in Part 200 of the Commissioner's Regulations are eligible for this type
   of funding. (See "Part 200 of the New York State Education Law" for
   further information.) Upon receipt of the petition, the Family Court
   judge may issue an order to approve costs which are then charged to the
   county. If the Commissioner of Education approves the order for the
   Family Court, based upon an individual review of the child's program and
   if the child's program meets certain minimum requirements, the State
   Education Department will reimburse the county for up to 50 percent of
   the amount ordered by the Court. Many Family Courts wait for a
   recommendation from the State Education Department before making a
   decision about petitions. 

   Legislation has been introduced in New York State for several years
   which would lower the age of educating children with handicapping
   conditions to age 3.  At the present time, PL94-457, a federal law
   passed in 1986, is being studied to determine how services in New York
   State should be provided to children with handicapping conditions 0-5. 


Family Educational Rights and Privacy Act (Public law 93-380)


   The Family Educational Rights and Privacy Act (FERPA) or Buckley
   Amendment gives parents of students under age 18, and students age 18
   and over, the right to examine records kept in the student's personal
   file. The major provisions of the Act are: parents and eligible students
   have the right to review and have a copy of their child's educational
   records or their own records; parents and eligible students have the
   right to have the records explained and interpreted by school officials;
   school officials may not destroy any records if there is an outstanding
   request to inspect and review them ; and, parents and eligible students
   who believe that information contained in the education records is
   inaccurate, misleading, or a violation of any rights of the student may
   request that the records be changed. If the school decides that the
   records should not be changed, the parent or eligible student must be
   advised of his / her right to a hearing. A record containing information
   regarding requests for records must be maintained with the student's
   files. This information can be inspected by the parent or eligible
   student. 


Family Home for Adults


   As defined in Section 2, New York State Social Services Law, this means
   a boarding home for two to four dependent adults who are aged, blind or
   disabled. 


For more information, contact : 


		New York State Department of Social Services
		40 North Pearl Street
		Albany, New York 12243
		(518) 474-9516
		
		
Federal Rehabilitation Act of 1973


   The purpose of the Federal Rehabilitation Act of 1973 (Public Law 93-
   112) is to afford the same opportunities and access to training and
   employment as any other qualified person with no disabilities. The
   various components of the Act mandate specific programs for
   comprehensive State-level rehabilitation services, Federal and State
   job-generating programs, Independent Living Service Centers, and, most
   importantly, establish the rights of individuals with disabilities under
   Federal law. One of the most well known components of the Act is Section
   504 of Title V, commonly known as "504, " which delineates the
   provisions prohibiting discrimination against otherwise qualified
   persons by any program or activity receiving Federal monies. 


For further information, contact your local Office of Vocational
Rehabilitation, or : 


		New York State Office of Vocational Rehabilitation
		99 Washington Avenue
		Albany, New York 12234
		(518) 474-2714
		
		Office of Civil Rights
		U. S. Department of Education
		Region II, Federal Building
		26 Federal Plaza
		New York, New York 10278
		(212) 264-3160
		

Fee-For-Service


   This term refers to a payment of a fee established by a provider (i.e.
   rehabilitation agency, health care providers) for a specific service. 


Fibrosis


   Formation of fiber or scar tissue as a result of structural change or
   other damage. Occurs in the pancreas and/or lungs of many people with
   Cystic Fibrosis (see term for definition) as a result of abnormal mucus
   accumulations. 



Flynn Act

   On September 1, 1974, Chapter 988 of the Laws of 1974 (sponsored by
   State Senator John E. Flynn) was signed by then Governor Wilson amending
   the Human Rights Law to guarantee citizens with disabilities protection
   against discrimination in housing, employment, public accommodations,
   training programs and non-sectarian education due to mental, physical or
   medical disability. Now commonly known as the " Flynn Act, " this law
   also specifically defined the term "disability. " This legal definition
   was expanded by Chapter 902 of the Laws of 1983 to the following:  "..
  . (a) a physical, mental or medical impairment resulting from
   anatomical, physiological or neurological conditions which prevents the
   exercise of a normal bodily function or is demonstrable by medically
   accepted clinical or laboratory diagnostic techniques; or, (b) a record
   of such an impairment; or, (c) a condition regarded by others as such an
   impairment, provided, however, that in all provisions of this article
   dealing with employment, the term shall be limited to disabilities which
   do not prevent the complainant from performing in a reasonable manner
   the activities involved in the job or occupation sought or held. " For
   more information, you may obtain a copy by writing for: The Flynn Act:
   Prohibiting Discrimination Against the Disabled, Update 1984. 


Address: 


		New York State Senate Select Committee on the Disabled 
		Legislative Office Building 
		Albany, New York 12247 
		(518) 455-2096 
		(518) 436-3597 (TDD)
		


Foster Care Home


   A private home certified by an agency (i. e. Department of Social
   Services) providing a family life experience for those who need care
   for a temporary or extended period. 


Free Appropriate Public Education (FAPE)


   As mandated by Public Law 94-142 (see specific term for definition) all
   children, regardless of disability, are entitled to a free appropriate
   public education. For children with disabilities, this may mean special
   education and related services (see specific term for definition) to be
   provided free at public expense, under public supervision and direction.
   Programs which must meet State standards include elementary and
   secondary school education in the least restrictive environment (see
   specific term for definition); and must be in conformity with the
   individualized education program of the Education for All Handicapped
   Children Act of 1975 (Public Law 94-142). 


For more information, contact : 


		Office of Education for Children with Handicapping Conditions
		State Education Department
		Education Building Annex
		Albany, New York 12234
		(518) 474-5548
		
		Bureau of Protection and Advocacy 
		New York State Commission on Quality of Care 
		99 Washington Avenue, 10th Floor 
		Albany, New York 12210 
		(518) 473-7378
		

Friedreich's Ataxia


   A rare, progressive disease of the nervous system which appears in
   childhood or early adolescence. In the early stages of the disease,
   standing and walking are unsteady; as it progresses, muscles become
   weak, there is loss of control of movement and vision may be impaired.
   There is also a partial loss of the sensations of touch and pressure in
   arms and legs. Unlike some neurological diseases, Friedreich's Ataxia
   does not affect mental capacity. The disease is hereditary, but the
   cause is unknown. 


For additional information, contact : 


		Friedreich's Ataxia Group in America, Inc.
		P. O. Box 11116
		Oakland, California 94611
		(415) 658-7014
		
		National Ataxia Foundation
		6681 Country Club Drive
		Minneapolis, Minnesota 55427
		(612) 540-6220
		
		
Generic Drugs

   The term for the scientific name for prescription drugs, as opposed to
   the manufacturer's brand name. Under New York State Education Law,
   Section 6816a, and effective April 1, 1978, pharmacists may substitute
   these generally less expensive generic drugs for brand names, when
   allowed by physicians.


Genetic Disorder and Hereditary Disorder


   Terms which are sometimes used interchangeably to describe a disease or
   condition passed from parent to child, but not necessarily from
   generation to generation, which can be identified as an error in a
   chromosome (thread-like bodies into which a cell nucleus divides during
   the process which forms the fetus) which is the carrier of genes (the
   biological determiners of the characteristics a fetus will have) and
   which may result in birth defects, disabilities or syndromes such as
   hemophilia, Tay-Sachs Disease, and Down Syndrome. (See terms for
   definitions.) 


GROW (Group Residents of Westchester)


   GROW is an organization of almost 500 parents and guardians of citizens
   who are developmentally disabled of Westchester County (New York) who
   are now residents of group homes, or who will be in the future. The
   purposes of this organization include: to support and advance the best
   interests of the group home residents ; to counsel residents, parents,
   guardians and advocates in areas affecting a resident's life in the
   community; to represent the interests of group residents in public and
   legislative matters ; and to be a source of information on regulations,
   agencies, policies and planning affecting group residences. 


For more information, contact : 


		GROW (Group Residents of Westchester, Inc.)
		P. O. Box 1692
		White Plains, New York 10602



Guardianship


   Guardianship is a legal proceeding in the Surrogate's Court which
   designates a parent, relative, friend or an organization to act on
   behalf of an individual who is mentally retarded and unable to manage
   his or her personal affairs without assistance. 


   Guardianship enables parents to ensure that they or other designees of
   their choosing may act as an advocate with legal authority on behalf of
   their children in protecting their rights and fostering their quality of
   life. The process empowers a guardian to maximize all available
   resources for the benefit of the person who is mentally retarded. 


   In New York State, parents of persons who are mentally retarded are
   considered the natural guardians of their children, as with any other
   child, until such child's eighteenth birthday (age of majority). After a
   person turns 18, he or she is deemed legally competent. Guardianship
   authorizes parents to exercise legal supervision of their children and
   provide them with lifetime protection even after they reach the age of
   18. 

   Once guardianship is obtained, it will extend for the lifetime of the
   individual, unless terminated by the court or terminated by marriage of
   the person who is mentally retarded. 


	  *The above was taken from the manual entitled:
	  "Guardianship: A Planning Alternative for Persons with
	  Mental Retardation" published by the New York State
	  Association for Retarded Children, Inc.


	  *Committees: The Supreme Court and county courts
	  outside of New York City have the power to appoint a
	  committee of the person or of the property, or both, of
	  an individual who is incompetent to manage
	  himself/herself or his/her property because of age,
	  alcohol abuse, mental illness or other cause. The
	  person declared "incompetent" loses his / her right to
	  vote, contract or make personal or property decisions.


	  *Conservators: The Supreme Court and county courts
	  outside of New York City have the power to appoint a
	  conservator for a person who is competent but whose
	  ability to take care of his I her property or provide
	  for himself/herself is impaired by illness, infirmity,
	  mental disability, age, alcohol abuse, drug addiction
	  or other causes. The Surrogate's Court may also appoint
	  a conservator when it becomes necessary in a proceeding
	  already pending in that court.


   The function of the conservator is to control and manage the property of
   the individual. In addition, the conservator must have a court approved
   plan for the preservation, maintenance and care of the individual' s
   income, assets and personal well-being including the provision of
   necessary personal and social protective services. The individual
   otherwise retains control over personal decisions. This option is used
   frequently for mentally infirm elderly individuals. 


	  *The above was taken from the manual entitled "
	  Guardianship for Persons Who Are Mentally Retarded",
	  NYS Commission on Quality of Care for the Mentally
	  Disabled.


For more information, please contact :

		
		New York State Association for Retarded Children, Inc.
		393 Delaware Avenue
		Delmar, New York 12054
		(518) 439-8311
		
		New York State Commission on Quality of Care for the Mentally 
		Disabled
		99 Washington Avenue, 10th Floor
		Albany, New York 12210
		(518) 473-7378
		
		New York State Bar Association
		1 Elk Street
		Albany, New York 12207
		(518) 463-3200


Guillain-Barre Syndrome


   Guillain-Barre syndrome, also called acute idiopathic polyneuritis
   (rapid onset of unknown cause of inflammation of many nerves) is a
   disorder that consists of weakness and even paralysis of muscles of the
   legs, arms, breathing muscles, throat, heart, urinary bladder, eyes, and
   other parts of the body, as well as abnormal sensations. The illness can
   be present in several ways, at times making the diagnosis difficult to
   establish in its early stages. The specific cause is not known, but a
   variety of events seem to trigger the illness, including viral
   infections. Research to date indicates that, regardless of the
   triggering event, the nerves of the person who has Guillain-Barre are
   attacked by the body's defense system against disease-- antibodies and
   white blood cells. As a result of this attack, the nerve insulation (
   myelin) and sometimes even the covered conducting part of the nerve (
   axon) is damaged, and signals are delayed or otherwise changed.
   Abnormal sensations and weakness follow. 


For more information, contact : 


		Guillain-Barre Syndrome Support Group
		1130 Park Avenue
		New York, New York 10128
		
		Guillain-Barre Syndrome Support Group
		RD #3, Box 25
		Altamont, New York 12009
		
		
        
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