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Glossary of Useful Terms
Accessible - In the case of a facility, readily usable by a particular individual; in the case of a program or activity, presented or provided in such a way that a particular individual can participate, with or without auxiliary aid(s); in the case of electronic resources, accessible with or without adaptive computer technology.
Accommodation - An adjustment to make a program, facility, or resource accessible to a person with a disability
Adaptive Behavior - Ability of an individual to meet the standards of maturation, learning and personal independence that are expected based on normative standards for age, cultural background, and experience through skills or the ability to adjust ones behavior necessary to compensate for health, motor or sensory deficits.
Advocacy - Advocacy means acting on behalf of another. Advocates work to protect the rights and opportunities of individuals with disabilities.
Alpha-A-crystallin Gene - This is a gene that controls the amount of protein in the lens of the eye and may be connected to the development of cataracts.
Alpha-feto protein (AFP) - AFP is a protein present in the blood of pregnant women. Abnormally low amounts of it may indicate that the fetus has Down syndrome. It is one of the substances tested in early prenatal tests.
Alzheimer's Disease - Alzheimers Disease is a degenerative disease of the brain that causes the gradual loss of mental ability. Although usually a disease of older adults, there is a higher incidence of Alzheimer's Disease in individuals with Down syndrome, sometimes with an onset as early as in the 30's.
Amblyopia - "Lazy eye." Amblyopia that is not treated can result in the loss of vision in the weaker eye. When diagnosed early, it can be corrected by putting a patch over the dominant eye, thus helping the weaker eye to develop.
American with Disabilities Act (ADA) - A comprehensive federal law that prohibits discrimination by employers, government agencies, public services, and public accommodations (such as public buildings, public transportation, schools, restaurants, hotels, theaters, etc.) against people with disabilities.
Amniocentesis - Amniocentesis is a procedure whereby a sample of amniotic fluid is removed from the amniotic sac via a needle. The amniotic fluid can then be sent for evaluation of fetal lung maturity, genetic evaluation, the presence of infection, or chromosome analysis. Chromosomes are structures that contain all of the genetic information in our cells. The amniotic fluid contains numerous free-floating fetal cells that can be grown in a laboratory. When these cells multiply and reach a certain number, their chromosomes are extracted and analyzed. It takes about two weeks to perform chromosome analysis. The fluid also contains proteins, minerals and other compounds that can be tested, and these studies may take 1 to 7 days to perform.
Amniotic Fluid - The fluid in the uterus that surrounds a fetus.
Amyloid Beta Protein Gene - A gene that controls the production of certain proteins in the brain. It is believed that this protein is affected in both Down syndrome and in Alzheimer's Disease.
Ankle-Foot Orthotics (AFOs) - AFOs are orthotics that are worn inside shoes and provide extra support to ankles and feet. Many young children with Down syndrome have weak ankles and need this extra support when they are first learning to walk.
ARC - An organization previously named "The Association for Retarded Citizens" but now simply called "The ARC." This has traditionally been a parent-run organization that advocates for individuals with cognitive disabilities. The ARC was instrumental in getting the first special education laws passed in the 1970's.
Assistive Technology - Technology used to assist a person with a disability.
Astigmatism - An irregularity in the cornea, which is the clear outer part of the eyeball. It has also been called a cornea "out of the round." Because it is thicker in some places than others, light rays are bent unevenly, causing blurred vision. It can exist along with any other vision problem and can be corrected with glasses or lenses.
Atlantoaxial Instability - Instability in the joints of the upper bones of the spinal column, resulting in weakness in the neck region. Many individuals with Down syndrome have atlantoaxial instability. It presents a precaution for tumbling, gymnastics, etc.
Atrial Septal Defect (ASD) - A defect, usually a small hole, in the wall between the two upper chambers of the heart.
Atrioventrical Canal Defect (AV canal) - A defect in the structure of the heart in which the walls of the two upper chambers and the two lower chambers may be deformed.
Attention Deficit Hyperactive Disorder (ADHD) - Condition in which there is difficulty staying "on task" and problems with hyperactivity and impulse control.
Audiology - Tests of hearing ability. A typical audiometric test determines the threshold of hearing at the frequencies most often used in human speech. It also can include the ability to hear and repeat words when presented through earphones.
Auditory Brainstem Response (ABR) - A hearing test that measures electronically the brain's reception of sound. It can be used to measure hearing in infants who are unable to give a verbal response to more traditional audiometric tests. It is also called auditory evoked potential, auditory evoked response, and evoked response audiometry.
Autism - Autism is actually a spectrum of developmental disorders characteristics by social and communicative problems. It can range from pervasive developmental delay in young children and from Asperger's to full-blown autism. It can exist along with other disabilities, including Down syndrome.
Awareness - See public awareness.
Babies Can't Wait - A statewide early intervention program in Georgia that provides interagency service delivery for infants and toddlers wtih developmental delays or disabilities and their families. It is part of the IDEA, which guarantees all eligible children access to services that will enhance their development. The Georgia Department of Human Resources Division of Public Health is the lead agency for administering the program.
Baby Net - South Carolina's IDEA Part C interagency early intervention program for infants and toddlers under three (3) years of age with developmental delays or conditions associated with developmental delays. SC First Steps to School Readiness is the Baby Net lead agency. Children may be eligible for Baby Net if they are learning or developing slowly. Early Intervention services are based upon the child‟s needs and may include physical therapy, occupational therapy, speech therapy, assistive technology, special instruction and/or case management.
Brachycephaly - A condition in which the back of the skull is somewhat flatter than normal.
Brushfield spots - Light spots on the outer part of the iris in the eye, often a manifestation of Down syndrome.
Buddy Walk - Buddy Walk is a registered trademark by the National Down Syndrome Society. Buddy Walks raise awarness and inclusion of individuals with Down syndrome, and serve as aNavenue to raise funds for an organization Those holding Buddy Walks do so in compliance with a contract with NDSS. The first Buddy Walk was held in 1995. The first CSRA Buddy Walk was held in 2008.
Cardiologist - A doctor who specializes in diagnosing and treating heart conditions.
Cataracts - A disease of the eye in which the lens become cloudy or opaque, resulting in partial or total blindness. Cataract surgery is very effective in removing the cloudy lens and inserting an artificial one, usually resulting in excellent vision.
Celiac Disease - A disease of the intestines characterized by the inability to digest gluten, a substance found in wheat, barley, rye, and other products. A gluten-free diet can help prevent the stomach ache and diarrhea, etc. that accompany the condition. Many individuals with Down syndrome have celiac disease.
Certificate of Medical Necessity - A form required by Medicaid/Medicare authorizing the use of certain durable medical items/equipment (DME) prescribed by a physician. This form is to be completed by a doctor or the doctor's employee. The provider of the DME will coordinate with the person‟s doctor to see that all the necessary information is submitted to Medicare. A change in prescription and/or a change in the person's condition require that an updated certificate be completed and submitted.
Chorionic Villi Sampling (CVS) - A method for testing the chromosomes of an embryo at 9 - 11 weeks of pregnancy. A small number of fetal cells are removed from the chorion (the outside of the placenta) through a catheter inserted through the cervix into the uterus. The cells' chromosomes are then tested.
Chromosomes - Microscopic rod-shaped bodies in the nucleus of every cell of the body that contain genetic material. There are 23 pairs of chromosomes (one from each parent), resulting in 46 total. In Down syndrome, there is an extra chromosome 21, resulting in 3 rather than 2, or 47 total.
Community Residential Care Facilities (CRCF) - A facility licensed by DHEC which offers room and board and provides/coordinates a degree of personal assistance for two (2) or more individuals, who are at least 18 years old, and who are not related to the licensee. It is designed to accommodate individual residents' changing needs and preferences, maximize residents' dignity, autonomy, privacy, independence and safety, and encourage family and community involvement. It offers a beneficial and protected environment specifically for individuals who have mental illness or intellectual disabilities. A CRCF offers the opportunity to live in the community in a homelike environment under the supervision of qualified, trained caregivers. There are private CRCFs (“Boarding Homes”) in many communities. DDSN also contracts with qualified providers to operate CRCFs.
Community Training Home I Model (CTH I) - A licensed residential setting offered by DDSN where personalized care, supervision and individualized training are provided, in accordance with a service plan, to a maximum of two (2) people living in a private home Caregivers are employed by or independently contracted with contracted qualified providers.
Community Training Home II Model (CTH II) - A residential setting offered by DDSN which offers the opportunity to live in a homelike environment in the community under the supervision of qualified and trained staff. Care, supervision, and skills training are provided according to individualized needs as reflected in the service plan. No more than four (4) people live in each licensed residence.
Cognition - Cognition is the process of perceiving, thinking, reasoning, and analyzing. Many individuals with Down syndrome have problems with cognitive tasks or exhibit cognitive delays.
Conductive Hearing Loss - A hearing loss that occurs because sounds are not getting to the inner ear, or cochlea, where they can be processed and sent to the auditory nerve and the brain. A conductive hearing loss can occur because of excess cerumen (wax) in the ear, because of problems with the tympanic membrane (eardrum), because the bones in the middle ear are not working correctly, or because of fluid in the middle ear. Conductive losses can make speech and language learning very difficult. Unlike sensorineural (nerve) losses, however, they can be medically or surgically corrected, resulting in normal hearing. Also, hearing aids work very well for individuals who have a conductive loss as making sounds louder results in normal hearing. Many children with Down syndrome have conductive hearing losses, sometimes a result of shorter Eustachian tubes and a greater prevalence of fluid in the middle ear.
Congenital Heart Defect - A defect of the heart that is present from birth.
Cost of Cre Lability - A concern in setting up special needs trusts -- the state that is providing care to a person with a disability has a right to charge that individual for care and to collect from his or her personal assets. Trusts can be set up so that the person can benefit from state funded programs without tapping into their personal assets.
Cyanosis - A bluish color of the skin caused by a lack of oxygen in the blood. It can occur in babies with heart defects.
DDSN – See South Carolina Department of Disabilities and Special Needs
Developmental Delay - A delay in any developmental area (fine/gross motor, speech/language, cognitive/social/emotional) in which the person is significantly behind typical developmental milestones.
Developmental Milestone - A developmental goal that acts as a measurement of developmental progress over time, such as an infant rolling over between two to four months of age. There are "typical" developmental milestones for all developmental areas.
Diuretics - Drugs that increase the flow of urine, resulting in a decrease of fluid in the body. They are often used by children with heart defects to reduce the stress on the heart.
Duodenal Atresia - A narrowing or blockage of the first part of the small intestine. This can usually be corrected by a simple surgical technique.
Ear, Nose, and Throat specialists (ENT) - Medical doctors who specialize in ENT -- they see many children with Down syndrome for ear infections, tonsil and adenoid problems, sleep apnea, etc.
Early Intervention (EI) - Provides an array of family-focused, in-home services for children with an intellectual disability or related disability from birth to age six. Early Interventionists help families understand their child’s development and assist in providing therapeutic intervention and special instruction services. Early Intervention services are provided in the child‟s own home or in the child’s natural environment.
Wchocardiogram (ECHO) - A painless test that uses high-frequency sound waves to create an image of the heart.
Electrocardiogram (EKG or ECG) - A medical instrument that measures the electrical impulses of the heart. These measurements show a cardiologist how a heart is functioning and can reveal heart disease.
Endocrinologist - A medical doctor specializing in the endocrine system, which includes hormones. Many individuals with Down syndrome see endocrinologists for thyroid disorders.
Epicanthal Folds - Small folds of skin in the inner corners of the eyes. They are often present in babies with Down syndrome.
Estate Planning - Formal written arrangements for handling the assets of a person after death. Many parents of individuals with Down syndrome do estate planning so that they can be sure their loved one is cared for in the future without losing any public assistance to which they are entitled.
ETs-z Gene - This is a gene found on the 21st chromosome involved in cancer or leukemia. It is called an oncogene because of its relationship to cancer. Interestingly, leukemia is a little more prevalent in individuals with Down syndrome, but solid tumors are very rare.
Eustachian Tube - A small tube between the middle ear and the back of the throat that controls air pressure in the middle ear. If it becomes blocked fluid can build up in the middle ear, resulting in a conductive hearing loss. In many individuals with Down syndrome, the eustachian tube is very short and problems with the tube and ear infections are common.
Expressive Language - The ability to use gestures, words, or written symbols to communicate. Many individuals with Down syndrome have significant delays in expressive language.
Family Support Plan (FSP) - Plan of care form used for children age three (3) to their sixth (6th) birthday receiving Early Intervention services.
Fee for Service Medicaid - Referred to often as “regular Medicaid” where a beneficiary can go to any provider that takes Medicaid. The provider charges a fee for each service and, in turn, bills Medicaid directly for each service rendered.
Feeding Therapy - When a child has oral aversion or oral sensitivity, when he/she has had to be fed through a tube, or when he/she has an extremely weak suck and isn't nursing well, feeding therapy may be needed. An occupational or speech therapist typically does feeding therapy, incorporating behavior management techniques with feeding techniques.
Fine Motor - Fine motor skills involve the small muscles of the body, such as hands, feet, fingers, toes, etc. Skills involve self-help such as dressing, or hand skills such as feeding oneself, drawing/writing. Fine motor skills are involved in manipulating toys and learning about the world around you.
Free Appropriate Public Education (FAPE) - The requirement, introduced by EHA of 1975, which requires schools to provide an education relevant to the needs of students with disabilities at no cost to families. The courts have generally stated that appropriateness does not mean optimal, only that the student is progressing at a reasonable rate.
Gastroenterologist - A medical doctor specializing in the digestive track.
Gastroesophageal Reflux (GERD) - A condition in which stomach contents (including stomach acids) flow upward into the esophagus, causing heartburn and eventual erosion of esophageal tissue.
Generalization - Being able to use a skill learned in one setting or situation in a different setting or situation. Generalization is also used to take information about an object or concept and make conclusions about a similar object or concept. It is often a skill that is difficult for individuals with Down syndrome, and may require attention in the classroom or in therapy.
Genes - Genes are contained within chromosomes and contain hereditary material. They control specific traits.
Geneticist - A person who studies genes, chromosomes, and heredity. Because Down syndrome involves chromosomes, geneticists are usually involved in making the diagnosis, counseling parents, and helping understand the implications of the condition.
Georgia Council on Developmental Disabilities (GCDD) - Formerly the Governor's Council on Developmental Disabilities. GCDD collaborates with Georgia's citizens, public and private advocacy organizations and policymakers to positively influence public policies that enhance the quality of life for people with disabilities and their families. This is done through education and advocacy activities, program implementation, funding and public policy analysis and research.
Gross Motor - Involving the large muscles of the body. These skills include rolling over, sitting up, crawling, walking, running, etc.
Guardian ad litem - A guardian ad litem is a person appointed by a court to act in the best interests of an individual who cannot make decisions for himself/herself.
Health Insurance Portability & Accountability Act (HIPAA) - A law passed in 1996 which is also sometimes called the "Kassebaum-Kennedy" law. This law expands your health care coverage if you have lost your job, or if you move from one job to another. HIPAA also protects you and your family if you have: pre-existing medical conditions, and/or problems getting health coverage, and you think it is based on past or present health. The HIPAA Privacy Rule provides federal protections for personal health information held by covered entities and gives patients an array of rights with respect to that information. The HIPAA Security Rule specifies a series of administrative, physical, and technical safeguards for covered entities to use to assure the confidentiality, integrity, and availability of electronic protected health information.
HIPAA also:
limits how companies can use your pre-existing medical conditions to keep you from getting health insurance coverage;
usually gives you credit for health coverage you have had in the past;
may give you special help with group health coverage when you lose coverage or have a new dependent; and
generally, guarantees your right to renew your health coverage.
HIPAA does not replace the states' roles as primary regulators of insurance.
Heart Catherization - A surgical technique in which a catheter is passed into the heart so that blood pressure and blood flow can be measured and viewed.
Hirschsprung's Disease - A condition in which there are no nerve cells in the colon (large intestine). It appears during early infancy and causes the colon to discend.
Home and Community-Based Service (HCBS) Waiver Programs - Home and Community Based Service Waiver programs are the Medicaid alternative to providing long-term care services in institutional settings. If a person qualifies, each person chooses whether services are provided in their homes and communities versus in an institutional setting. States may offer a variety of services to people under a Home and Community Based Service Waiver program. These programs may provide a combination of both traditional medical services (i.e. dental services, skilled nursing services) as well as non-medical services (i.e. respite, case management, and environmental modifications). DDSN operates four Home and Community Based Service Waiver programs: The Mental Retardation/Related Disabilities (MR/RD) Waiver, Community Supports (CS) Waiver, Head and Spinal Cord Injury (HASCI) Waiver, and the Pervasive Developmental Disorder (PDD) Waiver.
Hyperextensibility - A condition in which joints (hips, shoulders, etc.) are unusually flexible. Many individuals with Down syndrome have hyperextensibility, resulting in low tone.
Hypermetropia - The term for farsightedness, a condition in which near objects are blurred and objects at a distance can be seen clearly. It can be corrected with glasses.
Hypothyroidism - The decreased production of thyroid hormone by the thyroid gland. This condition is more common in babies with Down syndrome than in other children, but is easily treated.
Hypotonia - Low muscle tone. Most individuals with Down syndrome have some degree of hypotonia.
Individual Family Support Plan (IFSP) - The service plan process/completed service document for a child birth to three (3) years and his/her family when receiving Early Intervention services. The planning process involves a joint effort between parents and specialists. The written document lists the early intervention services a child needs in order to grow and develop and services the family needs to help the child grow and develop.
Individuals with Disabilities Education Act (IDEA) - The law that establishes the right of children with disabilities, including those with Down syndrome, to a free, appropriate public education.
Individualized Education Program (IEP) - A written report that details the special education program to be provided a child aged three and older who has a disability.
Inclusion - The practice of having children with Down syndrome and other disabilities attend and participate in (with or without accomidations) the same school, classes, programs, and with their non-disabled peers.
Intellectual Disability - A condition with an onset prior to the age of 18 in which an individual demonstrates significantly below-average intellectual functioning (a valid IQ of 70 or below), and has concurrent deficits in adaptive functioning in at least two areas: communication, self-care, home living, social/interpersonal skills, use of community resources, self-direction, functional academic skills, work, leisure, health and safety.
Katie Beckett Waiver - A Medicaid waiver program named after the child (Katie Beckett) whose family argued that they should be afforded the funding that would be spent on institutionalization of their child to provide support services at home if they chose not to have their child institutionalized. (See Medicaid and TEFRA)
Least Restrictive Environment (LRE) - An environment in which services are delivered with minimum limitation, intrusion, disruption or departure from typical patterns of living available to individuals without disabilities; which do not subject an individual or others to unnecessary risks to health or safety; and which maximize the individual‟s level of independence, productivity and inclusion in the community.
Leukemia - Leukemia is a cancer of the blood. Children with Down syndrome are at increased risk for developing leukemia.
Mainstreaming - see inclusion.
Medicaid - A federal health care program generally serving eligible low income individuals whose income and assets are below specific levels. In South Carolina it is often referred to as TEFRA and in Georgia it is often referred to as Katie Beckett or NOW. In South Carolina, DHHS determines eligibility for Medicaid. An individual applying for Medicaid as a Social Security Income (SSI) recipient in South Carolina must apply at their local Social Security office. Generally, an individual who is approved for SSI in South Carolina will automatically receive Medicaid. Applications for all other coverage groups may be filed in person or by mail. Applications may be filed at out-stationed locations such as the county health departments, community health centers, most hospitals and the county Department of Social Service offices. The South Carolina Medicaid program offers different ways for its members to receive healthcare services. The choices are either managed care or fee-for-service.
Medicaid Managed Care Organizations (MCO) - A Medicaid MCO operates much the same as a Health Maintenance Organization (HMO), as care is furnished through a network of providers (primary and specialty), hospitals, pharmacies, etc. Services rendered are authorized by the MCO to ensure appropriate care management, disease management, and care coordination. MCOs require members to choose a Primary Care Physician (PCP) who serves as the primary point of contact. Members are expected to contact their PCP first before seeking treatment elsewhere. The PCP may diagnose and treat the problem, or refer the member to a specialist within the MCO network. The process for authorizing services within the MCOs may be different for each plan.
Mental Retardation/Developmental Disability - Mental retardation is below average mental function combined with below average adaptive behavior. Children with mental retardation learn more slowly than other children, but the term "mental retardation" itself does not indicate the child's level of cognitive ability. A preferable term used today is "cognitive disability" or "intellectual disability." The term "retarded" has a lot of negative connotations today and is offensive to many. Developmental disabilities are those that affect major life skills and appear in the developmental period up to age 18.
Metatarsus Varus - Abnormal toeing in of the foot.
Microcephaly - head size that is at or below the third percentile on "normal" growth charts. Many individuals with Down syndrome have microcephaly.
Mosiac Down Syndrome (Mosiacism) - A rare type of Down syndrome in which a faulty cell division occurs in one of the first cell divisions after fertilization. The result is that some but not all of the baby's cells contain extra genetic material. The effects of Mosaic Down syndrome can be less obvious.
Myopia - Myopia is nearsightedness, a condition that causes objects in the distance to be blurred and near objects to be seen clearly. It can be corrected with glasses.
Naso Kacrimal Duct Obstruction - Blocked tear ducts. Many babies with Down syndrome have this condition. There are surgeries available to open the tear ducts and insert small tubes to keep them open.
National Down Syndrome Congress (NDSC) - National organization, located in Roswell, GA, whose purpose is to create a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome.
National Down Syndrome Month - October is National Down Syndrome Month.
National Down Syndrome Society (NDSS) - National Organization, located in New York, Ny whose mission is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.
Neurodevelopmental Treatment (NDT) - NDT is an approach to therapy that emphasizes discouraging abnormal patterns of posture and movement and facilitates the greatest possible variety of innate normal basic motor patterns. It can be used by physical, occupational, or speech therapists.
Neonatal, Intensive Care Unit (NICU) - An intensive care unit designed for premature and ill newborn babies.
Nondisjunction - This is the failure of chromosome pairs to separate properly during meiosis or mitosis.
Nondisjunction Trisomy 21 - The most common type of Down syndrome, caused by the failure of chromosome number 21 to separate during meiosis of the egg or sperm.
Object Permanence - The cognitive understanding that objects exist even when they are out of sight. The "typical" age for achieving object permanence is around 18 months.
Occupational Therapy (OT) - Therapy that focuses on improving the development of fine motor and adaptive skills.
Ophthalmology - The medical field specializing in diagnosing and treating diseases of the eye.
Oral Motor - Relating to the muscles in and around the mouth and face. Oral motor skills are important in both eating and talking.
Palate - The "roof" of the mouth. Movements of the soft and hard palate are necessary to make certain speech sounds.
Patellar Instability - Instability of the kneecap.
Peridontal Disease - Disease of the gums and bones surrounding the teeth.
Perinatology - Medical doctors who specialize in high-risk pregnancies and newborns who have developmental disabilities.
pes planus - Flat feet.
Physical Therapy (PT) - Therapy to overcome physical problems, such as low muscle tone or weak muscles. Many children with Down syndrome are seen by physical therapists to work on gross motor skills.
Pediatric Intensive Care Unit (PICU) - An intensive care unit designed for ill and injured children.
Pincer Grasp -The use of the thumb and forefinger to grasp small objects. This is one of the goals in occupational therapy for many children.
Plans for Achieving Self Support (PASS) - An SSI program in which the recipient can receive income or assets in his/her own name, provided the funds will be used to make it possible for him/her to work in the future, or to establish a business or occupation that will enable him/her to become gainfully employed.
Public Awareness - Activities designed to educate the public about Down syndrome and the potential of individuals who have Down syndrome.
Pulmonary Hypertension - High blood pressure in the blood vessels in the lungs. It can result from heart defects that cause excessive amounts of blood to be pumped into the lungs, and can be fatal if not corrected.
Pyloric Stenosis - A narrowing of the opening between the stomach and the duodenum, the first part of the small intestine. Can be surgically corrected.
Receptive Language - The ability to understand spoken, signed, or written communication.
Respite Care - Care provided to enable parents or caregivers to have time away from their child.
Seizures - Sudden loss of consciousness or convulsion resulting from abnormal electrical activity in the brain.
Self-help - The ability to take care of oneself, including eating, dressing, toileting, bathing, cleaning. Begins early with awareness, responsiveness, and participation in self-help activities.
Sensorineural Hearing Loss - A hearing loss that is the result of nerve damage in either the cochlea or along the auditory nerve.
Sensory Integration - Being able to integrate information from seeing,hearing, feeling, etc. Some children have problems interpreting information from the senses and are overwhelmed by incoming information.
Sensory Processing - The ability to process sensations, such as touch, sound, light, smell, movement.
Service Coordinator - Under SCDDSN a Service Coordinator is responsible for coordinating services to assure that people have access to a full array of needed community services including appropriate medical, social, educational or other needed services.
Service Provider - Person/Company who provides special services to assist those individuals with physical and/or mental conditions in meeting outcome goals.
Sign language - Manual communication where gestures or symbols are organized in a linguistic way. Each individual gesture is called a sign. Each sign has three distinct parts; the handshape, the position of the hands, and the movement of the hands. American Sign Language (ASL) is the most commonly used sign language in the United States. People from different countries speak different sign languages.
Siblings - Brothers and sisters.
Simian Crease – See transverse palmar.
Slanting Palpebral Fissures - The upward slanting appearance of the eyes of children with Down syndrome.
Sleep Apnea - An interruption in breathing during sleep. A condition in which breathing stops momentarily (for more than 5 seconds) during sleep. Many children with Down syndrome have sleep apnea and it is recommended that all children with Down syndrome have a sleep study by age 5.
South Carolina Department of Disabilities and Special Needs (SCDDSN) - The state agency that plans, develops, oversees and funds services for South Carolinians with severe, lifelong disabilities of intellectual disability, autism, traumatic brain injury and spinal cord injury and conditions related to each of these four disabilities. Our mission is to assist people with disabilities and their families in meeting needs, pursuing possibilities and achieving life goals, and to minimize the occurrence and reduce the severity of disabilities through prevention.
Special Needs Trust - A trust set up for a child with a disability that protects his/her governmental benefits but allows funds to be set aside for special interests and activities.
Speech Therapy - Therapy to improve oral motor skills and to learn receptive and expressive language.
Supplemental Security Income (SSI) - This is a federal public assistance program for qualified people with disabilities.
Strabismus - Crossed eyes, when one or both eyes look inward or outward. Can be corrected surgically
Syndrome - A group of symptoms or traits that indicate a particular condition.
Tactile Defensiveness - An overreaction to touch or an avoidance to toucH.
Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA) - Under Section 134 of TEFRA (P.L.97-248), states were allowed to make Medicaid benefits available to certain disabled children who would not ordinarily be eligible for Supplemental Security Income (SSI) benefits because of their parent's income or resources. South Carolina began covering these children effective January 1, 1995. (see Medicaid and Katie Beckett)
Ticket to Work and Work Incentives Improvement Act of 1999 (TWWIIA) - Enacted to increase opportunities for individuals with disabilities to work. Title I of the act provides access to employment training and placement services, and Title II of the act provides health care supports for working individuals with disabilities.
Tongue Protrusion - A habit of sticking the tongue out repeatedly. Some individuals with Down syndrome have normal sized tongues but small mouths and jaws and tongue protrusion seems more obvious.
Tracheo-Esophageal Fistula - A condition in which there is an abnormal opening between the intestinal tract and the respiratory system. It requires immediate surgical correction.
Transitioning - The process of moving from adolescence to adult roles in which a child reconciles their needs, interests, and preferences with adult norms and roles.
Transition Planning - The process of helping students and their families plan services to help them reach career goals and adult living objectives related to their needs, interests and preferences. The IDEA requires transition planning activities documented in the IEP for students aged 14 and older. The Individual Transition Plan (ITP) is also known as the “Statement of Needed Transition Services”.
Translocation Trisomy 21 - A rare form of Down syndrome caused when part of the 21st chromosome breaks off during meiosis and attaches to another chromosome, usually the 14th chromosome.
Rransverse Palmar - A single crease across the palm of the hands. This is one of the phycical traits seen in some children with Down syndrome.
Triple Ccreen - A prenatal combined screening for genetic markers of Down syndrome.
Trisomy 21 (T21) - Another name for Down syndrome. The term means there are are three, rather than two, 21st chromosomes in cells.
Tympanometry - An audiometric test that measures fluid in the middle ear (behind the ear drum) or detects a blockage of the eustachian tube.
Ventricular Septal Defect (VSD) - A hole in the wall separating the two lower chambers of the heart.
Vestibular - Pertaining to the system located in the inner ear that deals with balance and the ability to enjoy movement like swinging and roughhousing.
Vocational Rehabilitation Act of 1973 - Act prohibiting discrimination on the basis of disability which applies to any program that receives federal financial support. Section 504 of the Act is aimed at making educational programs and facilities accessible to all students. Section 508 of the Act requires that electronic office equipment purchased through federal procurement meets disability access guidelines.
World Down Syndrome Day - World Down Syndrome Day is celebrated on March 21, with events around the world to raise public awareness of Down syndrome. Down Syndrome International selected the date of 3-21 to signify the triplication of the 21st chromosome in Down syndrome. The first World Down Syndrome Day was held in 2006.
Accommodation - An adjustment to make a program, facility, or resource accessible to a person with a disability
Adaptive Behavior - Ability of an individual to meet the standards of maturation, learning and personal independence that are expected based on normative standards for age, cultural background, and experience through skills or the ability to adjust ones behavior necessary to compensate for health, motor or sensory deficits.
Advocacy - Advocacy means acting on behalf of another. Advocates work to protect the rights and opportunities of individuals with disabilities.
Alpha-A-crystallin Gene - This is a gene that controls the amount of protein in the lens of the eye and may be connected to the development of cataracts.
Alpha-feto protein (AFP) - AFP is a protein present in the blood of pregnant women. Abnormally low amounts of it may indicate that the fetus has Down syndrome. It is one of the substances tested in early prenatal tests.
Alzheimer's Disease - Alzheimers Disease is a degenerative disease of the brain that causes the gradual loss of mental ability. Although usually a disease of older adults, there is a higher incidence of Alzheimer's Disease in individuals with Down syndrome, sometimes with an onset as early as in the 30's.
Amblyopia - "Lazy eye." Amblyopia that is not treated can result in the loss of vision in the weaker eye. When diagnosed early, it can be corrected by putting a patch over the dominant eye, thus helping the weaker eye to develop.
American with Disabilities Act (ADA) - A comprehensive federal law that prohibits discrimination by employers, government agencies, public services, and public accommodations (such as public buildings, public transportation, schools, restaurants, hotels, theaters, etc.) against people with disabilities.
Amniocentesis - Amniocentesis is a procedure whereby a sample of amniotic fluid is removed from the amniotic sac via a needle. The amniotic fluid can then be sent for evaluation of fetal lung maturity, genetic evaluation, the presence of infection, or chromosome analysis. Chromosomes are structures that contain all of the genetic information in our cells. The amniotic fluid contains numerous free-floating fetal cells that can be grown in a laboratory. When these cells multiply and reach a certain number, their chromosomes are extracted and analyzed. It takes about two weeks to perform chromosome analysis. The fluid also contains proteins, minerals and other compounds that can be tested, and these studies may take 1 to 7 days to perform.
Amniotic Fluid - The fluid in the uterus that surrounds a fetus.
Amyloid Beta Protein Gene - A gene that controls the production of certain proteins in the brain. It is believed that this protein is affected in both Down syndrome and in Alzheimer's Disease.
Ankle-Foot Orthotics (AFOs) - AFOs are orthotics that are worn inside shoes and provide extra support to ankles and feet. Many young children with Down syndrome have weak ankles and need this extra support when they are first learning to walk.
ARC - An organization previously named "The Association for Retarded Citizens" but now simply called "The ARC." This has traditionally been a parent-run organization that advocates for individuals with cognitive disabilities. The ARC was instrumental in getting the first special education laws passed in the 1970's.
Assistive Technology - Technology used to assist a person with a disability.
Astigmatism - An irregularity in the cornea, which is the clear outer part of the eyeball. It has also been called a cornea "out of the round." Because it is thicker in some places than others, light rays are bent unevenly, causing blurred vision. It can exist along with any other vision problem and can be corrected with glasses or lenses.
Atlantoaxial Instability - Instability in the joints of the upper bones of the spinal column, resulting in weakness in the neck region. Many individuals with Down syndrome have atlantoaxial instability. It presents a precaution for tumbling, gymnastics, etc.
Atrial Septal Defect (ASD) - A defect, usually a small hole, in the wall between the two upper chambers of the heart.
Atrioventrical Canal Defect (AV canal) - A defect in the structure of the heart in which the walls of the two upper chambers and the two lower chambers may be deformed.
Attention Deficit Hyperactive Disorder (ADHD) - Condition in which there is difficulty staying "on task" and problems with hyperactivity and impulse control.
Audiology - Tests of hearing ability. A typical audiometric test determines the threshold of hearing at the frequencies most often used in human speech. It also can include the ability to hear and repeat words when presented through earphones.
Auditory Brainstem Response (ABR) - A hearing test that measures electronically the brain's reception of sound. It can be used to measure hearing in infants who are unable to give a verbal response to more traditional audiometric tests. It is also called auditory evoked potential, auditory evoked response, and evoked response audiometry.
Autism - Autism is actually a spectrum of developmental disorders characteristics by social and communicative problems. It can range from pervasive developmental delay in young children and from Asperger's to full-blown autism. It can exist along with other disabilities, including Down syndrome.
Awareness - See public awareness.
Babies Can't Wait - A statewide early intervention program in Georgia that provides interagency service delivery for infants and toddlers wtih developmental delays or disabilities and their families. It is part of the IDEA, which guarantees all eligible children access to services that will enhance their development. The Georgia Department of Human Resources Division of Public Health is the lead agency for administering the program.
Baby Net - South Carolina's IDEA Part C interagency early intervention program for infants and toddlers under three (3) years of age with developmental delays or conditions associated with developmental delays. SC First Steps to School Readiness is the Baby Net lead agency. Children may be eligible for Baby Net if they are learning or developing slowly. Early Intervention services are based upon the child‟s needs and may include physical therapy, occupational therapy, speech therapy, assistive technology, special instruction and/or case management.
Brachycephaly - A condition in which the back of the skull is somewhat flatter than normal.
Brushfield spots - Light spots on the outer part of the iris in the eye, often a manifestation of Down syndrome.
Buddy Walk - Buddy Walk is a registered trademark by the National Down Syndrome Society. Buddy Walks raise awarness and inclusion of individuals with Down syndrome, and serve as aNavenue to raise funds for an organization Those holding Buddy Walks do so in compliance with a contract with NDSS. The first Buddy Walk was held in 1995. The first CSRA Buddy Walk was held in 2008.
Cardiologist - A doctor who specializes in diagnosing and treating heart conditions.
Cataracts - A disease of the eye in which the lens become cloudy or opaque, resulting in partial or total blindness. Cataract surgery is very effective in removing the cloudy lens and inserting an artificial one, usually resulting in excellent vision.
Celiac Disease - A disease of the intestines characterized by the inability to digest gluten, a substance found in wheat, barley, rye, and other products. A gluten-free diet can help prevent the stomach ache and diarrhea, etc. that accompany the condition. Many individuals with Down syndrome have celiac disease.
Certificate of Medical Necessity - A form required by Medicaid/Medicare authorizing the use of certain durable medical items/equipment (DME) prescribed by a physician. This form is to be completed by a doctor or the doctor's employee. The provider of the DME will coordinate with the person‟s doctor to see that all the necessary information is submitted to Medicare. A change in prescription and/or a change in the person's condition require that an updated certificate be completed and submitted.
Chorionic Villi Sampling (CVS) - A method for testing the chromosomes of an embryo at 9 - 11 weeks of pregnancy. A small number of fetal cells are removed from the chorion (the outside of the placenta) through a catheter inserted through the cervix into the uterus. The cells' chromosomes are then tested.
Chromosomes - Microscopic rod-shaped bodies in the nucleus of every cell of the body that contain genetic material. There are 23 pairs of chromosomes (one from each parent), resulting in 46 total. In Down syndrome, there is an extra chromosome 21, resulting in 3 rather than 2, or 47 total.
Community Residential Care Facilities (CRCF) - A facility licensed by DHEC which offers room and board and provides/coordinates a degree of personal assistance for two (2) or more individuals, who are at least 18 years old, and who are not related to the licensee. It is designed to accommodate individual residents' changing needs and preferences, maximize residents' dignity, autonomy, privacy, independence and safety, and encourage family and community involvement. It offers a beneficial and protected environment specifically for individuals who have mental illness or intellectual disabilities. A CRCF offers the opportunity to live in the community in a homelike environment under the supervision of qualified, trained caregivers. There are private CRCFs (“Boarding Homes”) in many communities. DDSN also contracts with qualified providers to operate CRCFs.
Community Training Home I Model (CTH I) - A licensed residential setting offered by DDSN where personalized care, supervision and individualized training are provided, in accordance with a service plan, to a maximum of two (2) people living in a private home Caregivers are employed by or independently contracted with contracted qualified providers.
Community Training Home II Model (CTH II) - A residential setting offered by DDSN which offers the opportunity to live in a homelike environment in the community under the supervision of qualified and trained staff. Care, supervision, and skills training are provided according to individualized needs as reflected in the service plan. No more than four (4) people live in each licensed residence.
Cognition - Cognition is the process of perceiving, thinking, reasoning, and analyzing. Many individuals with Down syndrome have problems with cognitive tasks or exhibit cognitive delays.
Conductive Hearing Loss - A hearing loss that occurs because sounds are not getting to the inner ear, or cochlea, where they can be processed and sent to the auditory nerve and the brain. A conductive hearing loss can occur because of excess cerumen (wax) in the ear, because of problems with the tympanic membrane (eardrum), because the bones in the middle ear are not working correctly, or because of fluid in the middle ear. Conductive losses can make speech and language learning very difficult. Unlike sensorineural (nerve) losses, however, they can be medically or surgically corrected, resulting in normal hearing. Also, hearing aids work very well for individuals who have a conductive loss as making sounds louder results in normal hearing. Many children with Down syndrome have conductive hearing losses, sometimes a result of shorter Eustachian tubes and a greater prevalence of fluid in the middle ear.
Congenital Heart Defect - A defect of the heart that is present from birth.
Cost of Cre Lability - A concern in setting up special needs trusts -- the state that is providing care to a person with a disability has a right to charge that individual for care and to collect from his or her personal assets. Trusts can be set up so that the person can benefit from state funded programs without tapping into their personal assets.
Cyanosis - A bluish color of the skin caused by a lack of oxygen in the blood. It can occur in babies with heart defects.
DDSN – See South Carolina Department of Disabilities and Special Needs
Developmental Delay - A delay in any developmental area (fine/gross motor, speech/language, cognitive/social/emotional) in which the person is significantly behind typical developmental milestones.
Developmental Milestone - A developmental goal that acts as a measurement of developmental progress over time, such as an infant rolling over between two to four months of age. There are "typical" developmental milestones for all developmental areas.
Diuretics - Drugs that increase the flow of urine, resulting in a decrease of fluid in the body. They are often used by children with heart defects to reduce the stress on the heart.
Duodenal Atresia - A narrowing or blockage of the first part of the small intestine. This can usually be corrected by a simple surgical technique.
Ear, Nose, and Throat specialists (ENT) - Medical doctors who specialize in ENT -- they see many children with Down syndrome for ear infections, tonsil and adenoid problems, sleep apnea, etc.
Early Intervention (EI) - Provides an array of family-focused, in-home services for children with an intellectual disability or related disability from birth to age six. Early Interventionists help families understand their child’s development and assist in providing therapeutic intervention and special instruction services. Early Intervention services are provided in the child‟s own home or in the child’s natural environment.
Wchocardiogram (ECHO) - A painless test that uses high-frequency sound waves to create an image of the heart.
Electrocardiogram (EKG or ECG) - A medical instrument that measures the electrical impulses of the heart. These measurements show a cardiologist how a heart is functioning and can reveal heart disease.
Endocrinologist - A medical doctor specializing in the endocrine system, which includes hormones. Many individuals with Down syndrome see endocrinologists for thyroid disorders.
Epicanthal Folds - Small folds of skin in the inner corners of the eyes. They are often present in babies with Down syndrome.
Estate Planning - Formal written arrangements for handling the assets of a person after death. Many parents of individuals with Down syndrome do estate planning so that they can be sure their loved one is cared for in the future without losing any public assistance to which they are entitled.
ETs-z Gene - This is a gene found on the 21st chromosome involved in cancer or leukemia. It is called an oncogene because of its relationship to cancer. Interestingly, leukemia is a little more prevalent in individuals with Down syndrome, but solid tumors are very rare.
Eustachian Tube - A small tube between the middle ear and the back of the throat that controls air pressure in the middle ear. If it becomes blocked fluid can build up in the middle ear, resulting in a conductive hearing loss. In many individuals with Down syndrome, the eustachian tube is very short and problems with the tube and ear infections are common.
Expressive Language - The ability to use gestures, words, or written symbols to communicate. Many individuals with Down syndrome have significant delays in expressive language.
Family Support Plan (FSP) - Plan of care form used for children age three (3) to their sixth (6th) birthday receiving Early Intervention services.
Fee for Service Medicaid - Referred to often as “regular Medicaid” where a beneficiary can go to any provider that takes Medicaid. The provider charges a fee for each service and, in turn, bills Medicaid directly for each service rendered.
Feeding Therapy - When a child has oral aversion or oral sensitivity, when he/she has had to be fed through a tube, or when he/she has an extremely weak suck and isn't nursing well, feeding therapy may be needed. An occupational or speech therapist typically does feeding therapy, incorporating behavior management techniques with feeding techniques.
Fine Motor - Fine motor skills involve the small muscles of the body, such as hands, feet, fingers, toes, etc. Skills involve self-help such as dressing, or hand skills such as feeding oneself, drawing/writing. Fine motor skills are involved in manipulating toys and learning about the world around you.
Free Appropriate Public Education (FAPE) - The requirement, introduced by EHA of 1975, which requires schools to provide an education relevant to the needs of students with disabilities at no cost to families. The courts have generally stated that appropriateness does not mean optimal, only that the student is progressing at a reasonable rate.
Gastroenterologist - A medical doctor specializing in the digestive track.
Gastroesophageal Reflux (GERD) - A condition in which stomach contents (including stomach acids) flow upward into the esophagus, causing heartburn and eventual erosion of esophageal tissue.
Generalization - Being able to use a skill learned in one setting or situation in a different setting or situation. Generalization is also used to take information about an object or concept and make conclusions about a similar object or concept. It is often a skill that is difficult for individuals with Down syndrome, and may require attention in the classroom or in therapy.
Genes - Genes are contained within chromosomes and contain hereditary material. They control specific traits.
Geneticist - A person who studies genes, chromosomes, and heredity. Because Down syndrome involves chromosomes, geneticists are usually involved in making the diagnosis, counseling parents, and helping understand the implications of the condition.
Georgia Council on Developmental Disabilities (GCDD) - Formerly the Governor's Council on Developmental Disabilities. GCDD collaborates with Georgia's citizens, public and private advocacy organizations and policymakers to positively influence public policies that enhance the quality of life for people with disabilities and their families. This is done through education and advocacy activities, program implementation, funding and public policy analysis and research.
Gross Motor - Involving the large muscles of the body. These skills include rolling over, sitting up, crawling, walking, running, etc.
Guardian ad litem - A guardian ad litem is a person appointed by a court to act in the best interests of an individual who cannot make decisions for himself/herself.
Health Insurance Portability & Accountability Act (HIPAA) - A law passed in 1996 which is also sometimes called the "Kassebaum-Kennedy" law. This law expands your health care coverage if you have lost your job, or if you move from one job to another. HIPAA also protects you and your family if you have: pre-existing medical conditions, and/or problems getting health coverage, and you think it is based on past or present health. The HIPAA Privacy Rule provides federal protections for personal health information held by covered entities and gives patients an array of rights with respect to that information. The HIPAA Security Rule specifies a series of administrative, physical, and technical safeguards for covered entities to use to assure the confidentiality, integrity, and availability of electronic protected health information.
HIPAA also:
limits how companies can use your pre-existing medical conditions to keep you from getting health insurance coverage;
usually gives you credit for health coverage you have had in the past;
may give you special help with group health coverage when you lose coverage or have a new dependent; and
generally, guarantees your right to renew your health coverage.
HIPAA does not replace the states' roles as primary regulators of insurance.
Heart Catherization - A surgical technique in which a catheter is passed into the heart so that blood pressure and blood flow can be measured and viewed.
Hirschsprung's Disease - A condition in which there are no nerve cells in the colon (large intestine). It appears during early infancy and causes the colon to discend.
Home and Community-Based Service (HCBS) Waiver Programs - Home and Community Based Service Waiver programs are the Medicaid alternative to providing long-term care services in institutional settings. If a person qualifies, each person chooses whether services are provided in their homes and communities versus in an institutional setting. States may offer a variety of services to people under a Home and Community Based Service Waiver program. These programs may provide a combination of both traditional medical services (i.e. dental services, skilled nursing services) as well as non-medical services (i.e. respite, case management, and environmental modifications). DDSN operates four Home and Community Based Service Waiver programs: The Mental Retardation/Related Disabilities (MR/RD) Waiver, Community Supports (CS) Waiver, Head and Spinal Cord Injury (HASCI) Waiver, and the Pervasive Developmental Disorder (PDD) Waiver.
Hyperextensibility - A condition in which joints (hips, shoulders, etc.) are unusually flexible. Many individuals with Down syndrome have hyperextensibility, resulting in low tone.
Hypermetropia - The term for farsightedness, a condition in which near objects are blurred and objects at a distance can be seen clearly. It can be corrected with glasses.
Hypothyroidism - The decreased production of thyroid hormone by the thyroid gland. This condition is more common in babies with Down syndrome than in other children, but is easily treated.
Hypotonia - Low muscle tone. Most individuals with Down syndrome have some degree of hypotonia.
Individual Family Support Plan (IFSP) - The service plan process/completed service document for a child birth to three (3) years and his/her family when receiving Early Intervention services. The planning process involves a joint effort between parents and specialists. The written document lists the early intervention services a child needs in order to grow and develop and services the family needs to help the child grow and develop.
Individuals with Disabilities Education Act (IDEA) - The law that establishes the right of children with disabilities, including those with Down syndrome, to a free, appropriate public education.
Individualized Education Program (IEP) - A written report that details the special education program to be provided a child aged three and older who has a disability.
Inclusion - The practice of having children with Down syndrome and other disabilities attend and participate in (with or without accomidations) the same school, classes, programs, and with their non-disabled peers.
Intellectual Disability - A condition with an onset prior to the age of 18 in which an individual demonstrates significantly below-average intellectual functioning (a valid IQ of 70 or below), and has concurrent deficits in adaptive functioning in at least two areas: communication, self-care, home living, social/interpersonal skills, use of community resources, self-direction, functional academic skills, work, leisure, health and safety.
Katie Beckett Waiver - A Medicaid waiver program named after the child (Katie Beckett) whose family argued that they should be afforded the funding that would be spent on institutionalization of their child to provide support services at home if they chose not to have their child institutionalized. (See Medicaid and TEFRA)
Least Restrictive Environment (LRE) - An environment in which services are delivered with minimum limitation, intrusion, disruption or departure from typical patterns of living available to individuals without disabilities; which do not subject an individual or others to unnecessary risks to health or safety; and which maximize the individual‟s level of independence, productivity and inclusion in the community.
Leukemia - Leukemia is a cancer of the blood. Children with Down syndrome are at increased risk for developing leukemia.
Mainstreaming - see inclusion.
Medicaid - A federal health care program generally serving eligible low income individuals whose income and assets are below specific levels. In South Carolina it is often referred to as TEFRA and in Georgia it is often referred to as Katie Beckett or NOW. In South Carolina, DHHS determines eligibility for Medicaid. An individual applying for Medicaid as a Social Security Income (SSI) recipient in South Carolina must apply at their local Social Security office. Generally, an individual who is approved for SSI in South Carolina will automatically receive Medicaid. Applications for all other coverage groups may be filed in person or by mail. Applications may be filed at out-stationed locations such as the county health departments, community health centers, most hospitals and the county Department of Social Service offices. The South Carolina Medicaid program offers different ways for its members to receive healthcare services. The choices are either managed care or fee-for-service.
Medicaid Managed Care Organizations (MCO) - A Medicaid MCO operates much the same as a Health Maintenance Organization (HMO), as care is furnished through a network of providers (primary and specialty), hospitals, pharmacies, etc. Services rendered are authorized by the MCO to ensure appropriate care management, disease management, and care coordination. MCOs require members to choose a Primary Care Physician (PCP) who serves as the primary point of contact. Members are expected to contact their PCP first before seeking treatment elsewhere. The PCP may diagnose and treat the problem, or refer the member to a specialist within the MCO network. The process for authorizing services within the MCOs may be different for each plan.
Mental Retardation/Developmental Disability - Mental retardation is below average mental function combined with below average adaptive behavior. Children with mental retardation learn more slowly than other children, but the term "mental retardation" itself does not indicate the child's level of cognitive ability. A preferable term used today is "cognitive disability" or "intellectual disability." The term "retarded" has a lot of negative connotations today and is offensive to many. Developmental disabilities are those that affect major life skills and appear in the developmental period up to age 18.
Metatarsus Varus - Abnormal toeing in of the foot.
Microcephaly - head size that is at or below the third percentile on "normal" growth charts. Many individuals with Down syndrome have microcephaly.
Mosiac Down Syndrome (Mosiacism) - A rare type of Down syndrome in which a faulty cell division occurs in one of the first cell divisions after fertilization. The result is that some but not all of the baby's cells contain extra genetic material. The effects of Mosaic Down syndrome can be less obvious.
Myopia - Myopia is nearsightedness, a condition that causes objects in the distance to be blurred and near objects to be seen clearly. It can be corrected with glasses.
Naso Kacrimal Duct Obstruction - Blocked tear ducts. Many babies with Down syndrome have this condition. There are surgeries available to open the tear ducts and insert small tubes to keep them open.
National Down Syndrome Congress (NDSC) - National organization, located in Roswell, GA, whose purpose is to create a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome.
National Down Syndrome Month - October is National Down Syndrome Month.
National Down Syndrome Society (NDSS) - National Organization, located in New York, Ny whose mission is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.
Neurodevelopmental Treatment (NDT) - NDT is an approach to therapy that emphasizes discouraging abnormal patterns of posture and movement and facilitates the greatest possible variety of innate normal basic motor patterns. It can be used by physical, occupational, or speech therapists.
Neonatal, Intensive Care Unit (NICU) - An intensive care unit designed for premature and ill newborn babies.
Nondisjunction - This is the failure of chromosome pairs to separate properly during meiosis or mitosis.
Nondisjunction Trisomy 21 - The most common type of Down syndrome, caused by the failure of chromosome number 21 to separate during meiosis of the egg or sperm.
Object Permanence - The cognitive understanding that objects exist even when they are out of sight. The "typical" age for achieving object permanence is around 18 months.
Occupational Therapy (OT) - Therapy that focuses on improving the development of fine motor and adaptive skills.
Ophthalmology - The medical field specializing in diagnosing and treating diseases of the eye.
Oral Motor - Relating to the muscles in and around the mouth and face. Oral motor skills are important in both eating and talking.
Palate - The "roof" of the mouth. Movements of the soft and hard palate are necessary to make certain speech sounds.
Patellar Instability - Instability of the kneecap.
Peridontal Disease - Disease of the gums and bones surrounding the teeth.
Perinatology - Medical doctors who specialize in high-risk pregnancies and newborns who have developmental disabilities.
pes planus - Flat feet.
Physical Therapy (PT) - Therapy to overcome physical problems, such as low muscle tone or weak muscles. Many children with Down syndrome are seen by physical therapists to work on gross motor skills.
Pediatric Intensive Care Unit (PICU) - An intensive care unit designed for ill and injured children.
Pincer Grasp -The use of the thumb and forefinger to grasp small objects. This is one of the goals in occupational therapy for many children.
Plans for Achieving Self Support (PASS) - An SSI program in which the recipient can receive income or assets in his/her own name, provided the funds will be used to make it possible for him/her to work in the future, or to establish a business or occupation that will enable him/her to become gainfully employed.
Public Awareness - Activities designed to educate the public about Down syndrome and the potential of individuals who have Down syndrome.
Pulmonary Hypertension - High blood pressure in the blood vessels in the lungs. It can result from heart defects that cause excessive amounts of blood to be pumped into the lungs, and can be fatal if not corrected.
Pyloric Stenosis - A narrowing of the opening between the stomach and the duodenum, the first part of the small intestine. Can be surgically corrected.
Receptive Language - The ability to understand spoken, signed, or written communication.
Respite Care - Care provided to enable parents or caregivers to have time away from their child.
Seizures - Sudden loss of consciousness or convulsion resulting from abnormal electrical activity in the brain.
Self-help - The ability to take care of oneself, including eating, dressing, toileting, bathing, cleaning. Begins early with awareness, responsiveness, and participation in self-help activities.
Sensorineural Hearing Loss - A hearing loss that is the result of nerve damage in either the cochlea or along the auditory nerve.
Sensory Integration - Being able to integrate information from seeing,hearing, feeling, etc. Some children have problems interpreting information from the senses and are overwhelmed by incoming information.
Sensory Processing - The ability to process sensations, such as touch, sound, light, smell, movement.
Service Coordinator - Under SCDDSN a Service Coordinator is responsible for coordinating services to assure that people have access to a full array of needed community services including appropriate medical, social, educational or other needed services.
Service Provider - Person/Company who provides special services to assist those individuals with physical and/or mental conditions in meeting outcome goals.
Sign language - Manual communication where gestures or symbols are organized in a linguistic way. Each individual gesture is called a sign. Each sign has three distinct parts; the handshape, the position of the hands, and the movement of the hands. American Sign Language (ASL) is the most commonly used sign language in the United States. People from different countries speak different sign languages.
Siblings - Brothers and sisters.
Simian Crease – See transverse palmar.
Slanting Palpebral Fissures - The upward slanting appearance of the eyes of children with Down syndrome.
Sleep Apnea - An interruption in breathing during sleep. A condition in which breathing stops momentarily (for more than 5 seconds) during sleep. Many children with Down syndrome have sleep apnea and it is recommended that all children with Down syndrome have a sleep study by age 5.
South Carolina Department of Disabilities and Special Needs (SCDDSN) - The state agency that plans, develops, oversees and funds services for South Carolinians with severe, lifelong disabilities of intellectual disability, autism, traumatic brain injury and spinal cord injury and conditions related to each of these four disabilities. Our mission is to assist people with disabilities and their families in meeting needs, pursuing possibilities and achieving life goals, and to minimize the occurrence and reduce the severity of disabilities through prevention.
Special Needs Trust - A trust set up for a child with a disability that protects his/her governmental benefits but allows funds to be set aside for special interests and activities.
Speech Therapy - Therapy to improve oral motor skills and to learn receptive and expressive language.
Supplemental Security Income (SSI) - This is a federal public assistance program for qualified people with disabilities.
Strabismus - Crossed eyes, when one or both eyes look inward or outward. Can be corrected surgically
Syndrome - A group of symptoms or traits that indicate a particular condition.
Tactile Defensiveness - An overreaction to touch or an avoidance to toucH.
Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA) - Under Section 134 of TEFRA (P.L.97-248), states were allowed to make Medicaid benefits available to certain disabled children who would not ordinarily be eligible for Supplemental Security Income (SSI) benefits because of their parent's income or resources. South Carolina began covering these children effective January 1, 1995. (see Medicaid and Katie Beckett)
Ticket to Work and Work Incentives Improvement Act of 1999 (TWWIIA) - Enacted to increase opportunities for individuals with disabilities to work. Title I of the act provides access to employment training and placement services, and Title II of the act provides health care supports for working individuals with disabilities.
Tongue Protrusion - A habit of sticking the tongue out repeatedly. Some individuals with Down syndrome have normal sized tongues but small mouths and jaws and tongue protrusion seems more obvious.
Tracheo-Esophageal Fistula - A condition in which there is an abnormal opening between the intestinal tract and the respiratory system. It requires immediate surgical correction.
Transitioning - The process of moving from adolescence to adult roles in which a child reconciles their needs, interests, and preferences with adult norms and roles.
Transition Planning - The process of helping students and their families plan services to help them reach career goals and adult living objectives related to their needs, interests and preferences. The IDEA requires transition planning activities documented in the IEP for students aged 14 and older. The Individual Transition Plan (ITP) is also known as the “Statement of Needed Transition Services”.
Translocation Trisomy 21 - A rare form of Down syndrome caused when part of the 21st chromosome breaks off during meiosis and attaches to another chromosome, usually the 14th chromosome.
Rransverse Palmar - A single crease across the palm of the hands. This is one of the phycical traits seen in some children with Down syndrome.
Triple Ccreen - A prenatal combined screening for genetic markers of Down syndrome.
Trisomy 21 (T21) - Another name for Down syndrome. The term means there are are three, rather than two, 21st chromosomes in cells.
Tympanometry - An audiometric test that measures fluid in the middle ear (behind the ear drum) or detects a blockage of the eustachian tube.
Ventricular Septal Defect (VSD) - A hole in the wall separating the two lower chambers of the heart.
Vestibular - Pertaining to the system located in the inner ear that deals with balance and the ability to enjoy movement like swinging and roughhousing.
Vocational Rehabilitation Act of 1973 - Act prohibiting discrimination on the basis of disability which applies to any program that receives federal financial support. Section 504 of the Act is aimed at making educational programs and facilities accessible to all students. Section 508 of the Act requires that electronic office equipment purchased through federal procurement meets disability access guidelines.
World Down Syndrome Day - World Down Syndrome Day is celebrated on March 21, with events around the world to raise public awareness of Down syndrome. Down Syndrome International selected the date of 3-21 to signify the triplication of the 21st chromosome in Down syndrome. The first World Down Syndrome Day was held in 2006.