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AAHD

American Association on Health and Disability. AAHD’s mission is to support health promotion and wellness initiatives for people with disabilities at the federal, state and local level, reduce the incidence of secondary conditions in people with disabilities, as well as reduce health disparities between people with disabilities and the general population. AAHD achieves its mission through research, education, public awareness and advocacy. www.aahd.us.

AAMR

American Association on Mental Retardation. Since 1876, AAMR has been providing leadership in the field of mental retardation. AAMR is the oldest and largest interdisciplinary organization of professionals and others concerned about mental retardation and related disabilities. AAMR promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities. www.aamr.org. **NOTE: AAMR changed their name in 2007: AAIDD.

AAIDD

Formerly AAMR. **NOTE: Name change effective 2007. Since 1876, AAIDD has been providing leadership in the field of mental retardation. AAIDD is the oldest and largest interdisciplinary organization of professionals and others concerned about mental retardation and related disabilities. AAIDD promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities. www.aamr.org.

ABA

Architectural Barriers Act. The ABA requires that buildings and facilities be accessible if, since 1968, they were:

· designed, built, or altered with certain Federal funds, or · leased for occupancy by Federal agencies.

Buildings and facilities covered by the law must meet standards for accessibility issued by four Federal agencies. Accessibility standards cover such things as: walks, ramps, curb ramps, entrances, elevators, and rest rooms. They indicate how many of a certain item, such as accessible parking spaces, are required, where they must be located, and how they must be built or installed so they can be used by everyone.

http://makoa.org/gov/g15.htm

ACF

The Administration for Children and Families. ACF is a federal agency responsible for some 60 programs that promote the economic and social well-being of children, families and communities. ACF funds state, territory, local, and tribal organizations to provide family assistance (welfare), child support, child care, Head Start, child welfare, and other programs relating to children and families. Actual services are provided by state, county, city and tribal governments, and public and private local agencies. ACF assists these organizations through funding, policy direction, and information services. ACF is a division of DHHS. www.acf.hhs.gov.

ACLD

Association for Children and Adults with Learning Disabilities. ACLD, Inc. is a not-for profit, private, educational organization. Their mission is to enhance the quality of life of children and adults with specific learning disabilities and related neurobiological disorders by facilitating self-sufficiency and financial independence. http://www.acldonline.org\

ADA

Americans with Disabilities Act. The Americans with Disabilities Act gives civil rights protections to individuals with disabilities similar to those provided to individuals on the basis of race, color, sex, national origin, age, and religion. It guarantees equal opportunity for individuals with disabilities in public accommodations, employment, transportation, State and local government services, and telecommunications. http://www.usdoj.gov/crt/ada/.

ADD

Administration on Developmental Disabilities. ADD is the U.S. Government organization responsible for implementation of the DD Act. ADD, its staff and programs, are part of the ACF, of DHHS. www.acf.dhhs.gov/programs/add

ADL

Activities of Daily Living. The term "activities of daily living," or ADLs, refers to the basic tasks of everyday life, such as eating, bathing, dressing, toileting, and transferring. When people are unable to perform these activities, they need help in order to cope, either from other human beings or mechanical devices or both. Although persons of all ages may have problems performing the ADLs, prevalence rates are much higher for the elderly than for the non-elderly. http://aspe.hhs.gov/daltcp/reports/meacmpes.htm

AHRQ

Agency for Healthcare Research and Quality. AHRQ supports research on health care systems, health care quality and cost issues, access to health care, and effectiveness of medical treatments. It provides evidence-based information on health care outcomes and quality of care. Established: 1989. AHRQ is a public health agency of DHHS. www.ahrq.gov.

AMA

American Medical Association. Founded in 1847, the AMA helps doctors help patients by uniting physicians nationwide to work on the most important professional and public health issues.www.ama-assn.org.

AMCHP

Association of Maternal Child Health Programs. AMCHP has worked for over 60 years to protect the health and well-being of all families, especially those who are low-income and underserved. AMCHP represents state public health leaders who promote the health of America’s families. Members come from the highest levels of state government and include directors of maternal and child health programs, directors of programs for children with special health care needs, adolescent health coordinators and other public health leaders. Members of this national nonprofit organization also include academic, advocacy and community-based family health professionals, as well as families themselves. www.amchp.org/.

ANCOR

American Network of Community Options and Resources. ANCOR is a nonprofit trade association representing private providers who provide supports and services to people with disabilities. ANCOR’s mission is to empower providers and people with disabilities to celebrate diversity and effect change that ensures full participation. www.ancor.org.

AoA

Administration on Aging. AoA supports a nationwide aging network, providing services to the elderly, especially to enable them to remain independent. AoA supports some 240 million meals for the elderly each year, including home-delivered "meals on wheels." It helps provide transportation and at-home services, supports ombudsman services for elderly, and provides policy leadership on aging issues. AoA is a part of DHHS. www.aoa.dhhs.gov.

AOTA

American Occupational Therapy Association. AOTA is the nationally recognized professional association of more than 35,000 occupational therapists, occupational therapy assistants, and students of occupational therapy. Practitioners work with people experiencing health problems such as stroke, spinal cord injuries, cancer, congenital conditions, developmental problems, and mental illness. Occupational therapy helps people regain, develop, and build skills that are essential for independent functioning, health, and well-being. www.aota.org.

APA

American Psychological Association. The APA is a scientific and professional organization that represents psychology in the United States. With 150,000 members, APA is the largest association of psychologists worldwide. The mission of the APA is to advance psychology as a science and profession and as a means of promoting health, education, and human welfare. www.apa.org.

APTA

American Psychical Therapy Association. APTA is a national professional organization representing more than 66,000 members. Its goal is to foster advancements in physical therapy practice, research, and education. www.apta.org.

The ArcFormerly the Association for Retarded Citizens. Founded in 1950 by a small group of parents and other concerned individuals, the Arc of the United States is the 140,000 member national organization of and for people with mental retardation and related developmental disabilities and their families. The Arc advocates for the rights and full participation of all children and adults with intellectual and developmental disabilities. It also improves systems of supports and services, connects families, inspires communities and influences public policy.www.thearc.org.

ASA

Autism Society of America. Founded in 1965, the ASA is dedicated to increasing public awareness about autism and the day-to-day issues faced by individuals with autism, their families and the professionals with whom they interact. The Society and its chapters share a common mission of providing information and education, and supporting research and advocating for programs and services for the autism community. http://www.autism-society.org/site/PageServer?pagename=homepage

ASHA

American Speech-Language Hearing Association. ASHA is the professional, scientific, and credentialing association for more than 123,000 members and affiliates who are speech-language pathologists, audiologists, and speech, language, and hearing scientists in the United States and internationally. Founded in 1925, the mission of the American Speech-Language-Hearing Association is to promote the interests of and provide the highest quality services for professionals in audiology, speech-language pathology, and speech and hearing science, and to advocate for people with communication disabilities.www.asha.org.

AUCD

Association of University Centers on Disabilities. AUCD is a non-profit organization that promotes and supports the national network of university centers on disabilities, which includes UCEDDs, LENDs and DDRCs. Founded in 1967, the mission of AUCD is to advance policy and practice for and with people living with developmental and other disabilities, their families, and communities by supporting its members to engage in research, education, and service that support independence productivity, and a satisfying quality of life. www.aucd.org.

BIAABrain Injury Association of America. Founded in 1980, the BIAA is the leading national organization serving and representing individuals, families and professionals who are touched by a life-altering, often devastating, traumatic brain injury (TBI). Together with its network of more than 40 chartered state affiliates as well as hundreds of local chapters and support groups across the country, the BIAA provides information, education and support to assist the 5.3 million Americans currently living with traumatic brain injury and their families. www.biausa.org.

CAC

Consumer Advisory Committee. The mission of a CAC is to make recommendations to the Federal Communications Commission regarding consumer issues within the jurisdiction of the Commission and to facilitate the participation of consumers (including people with disabilities and underserved populations, such as Native Americans and persons living in rural areas) in proceedings before the Commission. Issues or questions to be considered by the CAC will include, but are not limited to the following topic areas:

· Access by People with Disabilities (e.g., telecommunications relay services, video description, captioning, accessible billing, and access to telecommunications products and services); and

· Consumer Protection and Education (e.g., cramming, slamming, consumer friendly billing, bundling of services, Lifeline/Linkup programs, customer service, privacy, telemarketing abuses, and outreach to underserved populations such as Native Americans and persons living in rural areas);

· Implementation of Commission rules and Consumer Participation in the FCC rulemaking process; and,

· Impact of New and Emerging Technologies (e.g., availability of Broadband, digital television, cable, satellite, low power FM, and the convergence of these and emerging technologies). http://www.fcc.gov/cgb/cac/charter.html

CAPClient Assistance Program. A nationwide network of congressionally mandated, legally based disability rights agencies. CAP agencies provide information and assistance to individuals seeking or receiving vocational rehabilitation services under the Rehabilitation Act, including assistance in pursuing administrative, legal and other appropriate remedies. Parent organization: NDRN.

CCDConsortium for Citizens with Disabilities. CCD is a coalition of approximately 100 national disability organizations working together to advocate for national public policy that ensures the self determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society. www.c-c-d.org.

CDCCenters for Disease Control and Prevention. Working with states and other partners, CDC provides a system of health surveillance to monitor and prevent disease outbreaks (including bioterrorism), implement disease prevention strategies, and maintain national health statistics. CDC provides for immunization services, workplace safety, and environmental disease prevention. CDC also guards against international disease transmission, with personnel stationed in more than 25 foreign countries. Established: 1946, as the Communicable Disease Center. CDC is a public health agency of DHHS. www.cdc.gov.

CDC-NCBDDDCenters for Disease Control and Prevention-National Center on Birth Defects and Developmental Disabilities. (See also: EPG) The NCBDDD promotes the health of babies, children, and adults, and enhance the potential for full, productive living. NCBDDD’s work includes identifying the causes of and preventing birth defects, developmental disabilities, helping children to develop and reach their full potential, and promoting health and well-being among people of all ages with disabilities. www.cdc.gov/ncbddd.

CECCouncil for Exceptional Children. The CEC is the largest international professional organization dedicated to improving educational outcomes for individuals with exceptionalities, students with disabilities, and/or the gifted. CEC advocates for appropriate governmental policies, sets professional standards, provides continual professional development, advocates for newly and historically underserved individuals with exceptionalities, and helps professionals obtain conditions and resources necessary for effective professional practice. www.cec.sped.org.

CISCouncil on Interdisciplinary Service. CIS is one of AUCD’s Councils of the Board of Directors. CIS works with issues of concern to the core disciplines within the AUCD network and acts as a conduit for information to go to and from the Board of Directors and the various disciplines. http://www.aucd.org/new/template/page.cfm?id=44.

CISSCommunity Integrated Service Systems. CISS projects (through grants, contracts, and other mechanisms) seek to increase the capacity for service delivery at the local level and to foster formation of comprehensive, integrated, community level service systems for mothers and children. 12.75% of the Title V Block Grant is allocated for CISS activities. http://www.amchp.org/legislative/grantsinfo.php.

CMSCenters for Medicaid and Medicare Services. CMS administers the Medicare and Medicaid programs, which provide health care to about one in every four Americans. Medicare provides health insurance for more than 42.1 million elderly and disabled Americans; Medicaid, a joint federal-state program, provides health coverage for some 44.7 million low-income persons, including 21.9 million children, and nursing home coverage for low-income elderly. CMS also administers the State Children's Health Insurance Program that covers more than 4.2 million children. Established as the Health Care Financing Administration: 1977. CMS is an agency of DHHS. www.medicare.gov, www.cms.gov.

CNCSCorporation for National and Community Service. The mission of the CNCS is to improve lives, strengthen communities, and foster civic engagement through service and volunteering. Among others, CNCS funds NSIP programs. www.cns.gov.

COCACouncil on Community Advocacy. COCA is one of AUCD’s Councils of the Board of Directors. COCA advises and assists AUCD in enhancing the quality of life for persons with developmental disabilities and their families by providing the consumer’s perspective on issues of concern, including cultural diversity issues. http://www.aucd.org/new/template/page.cfm?id=41.

CORECouncil on Research and Evaluation. CORE is one of AUCD’s Councils of the Board of Directors. CORE serves as a focus for the identification and discussion of issues regarding research and evaluation; serves as a representative voice of the research and evaluation activities within the AUCD network; and influences the development and implementation of initiatives relevant to achieving and sustaining appropriate research and evaluation activities to guide the development of national policies. http://www.aucd.org/new/template/page.cfm?id=65.

COTA

Certified Occupational Therapist. Certification is an important benchmark of quality in occupational therapy. Key stakeholders rely on certified providers for the following reasons:

· Certified occupational therapy professionals must participate in a comprehensive certification renewal process to demonstrate continuing proficiency

· Certification helps employers identify applicants who are committed to a personal choice of professional development.

Learn more at the website of the National Board for Certification in Occupational Therapy’s website: http://www.nbcot.org/index.html

CP

Cerebral Palsy. CP is an umbrella-like term used to describe a group of chronic disorders impairing control of movement that appear in the first few years of life and generally do not worsen over time. Symptoms of cerebral palsy lie along a spectrum of varying severity. An individual with cerebral palsy may have difficulty with fine motor tasks, such as writing or cutting with scissors; experience trouble with maintaining balance and walking; or be affected by involuntary movements, such as uncontrollable writhing motion of the hands or drooling. The symptoms differ from one person to the next, and may even change over time in the individual. http://www.ucp.org/

CPR

Cardio Pulmonary Resuscitation. CPR consists of mouth-to-mouth respiration and chest compression. CPR allows oxygenated blood to circulate to vital organs such as the brain and heart. CPR can keep a person alive until more advanced procedures (such as defibrillation - an electric shock to the chest) can treat the cardiac arrest. CPR started by a bystander doubles the likelihood of survival for victims of cardiac arrest. For more information, visit: http://www.americanheart.org/presenter.jhtml?identifier=3011764

CSHCNChildren with Special Health Care Needs. (aka: CYSHCN)

CYSHCNChildren and Youth with Special Health Care Needs. (aka: CSHCN)

DD

A developmental delay, or DD, occurs when a child has the delayed achievement of one or more of his/her “milestones”. This may affect the child's speech and language, fine and gross motor skills, and/or personal and social skills. Developmental delays, especially if they involve a language delay which may be secondary to a hearing loss, should be identified as early as possible. For more information, visit: http://www.keepkidshealthy.com/WELCOME/conditions/developmentaldelays.html

DD

Developmental Disability, or developmental disabilities. The term "developmental disabilities" includes a variety of life-long disabling conditions such as spinal cord injury, epilepsy, sensory impairment, cerebral palsy, autism and traumatic brain injury, many of which do not result in lowered intellectual functioning. http://www.qualitymall.org/main/

DD ActThe Developmental Disabilities Assistance and Bill of Rights Act of 2000, PUBLIC LAW 106-402. The DD Act (2000) was signed into law on October 30, 2000 by President Clinton. Originally authorized by President Kennedy in 1963, The DD Act (2000) reauthorizes the DD Councils, P&As, UCEDDs, and programs of national significance. In addition, the legislation authorizes separate grants for family support and a program of direct support for workers who assist individuals with developmental disabilities. The purpose of the DD Act is to assure that individuals with developmental disabilities and their families participate in the design of and have access to needed community services, individualized supports and other forms of assistance that not only promote independence, productivity, integration and inclusion, and self-determination through culturally competent programs. (http://www.md-council.org/about/dd_act.html).

DD CouncilsDevelopmental Disability Councils. Established by the DD Act, DD Councils identify the most pressing needs of people with developmental disabilities in their State or Territory and to develop innovative and cost-effective ways to meet these needs in a manner that upholds the human and civil value of people with developmental disabilities. Parent organization: NACDD.

DDRCDevelopmental Disabilities Research Center. DDRCs are a national resource that grew out of Congress’ mandate in 1963 to establish centers of excellence in mental retardation and developmental disabilities research. Twenty member Centers represent the nation’s first sustained effort to prevent and treat disabilities through biomedical and behavioral research. Today, DDRCs represent the world’s largest concentration of scientific expertise in the fields of intellectual and developmental disabilities. The scope of the research conducted at the Centers encompasses every known major dimension of mental retardation. DDRCs are members of AUCD. http://www.aucd.org/new/ddrcportal/template/index.cfm.

DHHS(or: HHS) US Department of Health and Human Services. DHHS is the United States Government's principal agency for protecting the health of all Americans and providing essential human services, especially for those who are least able to help themselves. The Department includes more than 300 programs, covering a wide spectrum of activities, including NIH, FDA, CDC, IHS, HRSA, SAMHSA, AHRQ, CMS, ACF, AoA and the Public Health Commissioned Corps. www.hhs.gov/.

DS

Down Syndrome. Normally, the nucleus of each human cell contains 23 pairs of chromosomes, half of which are inherited from each parent. When some or all of a person’s cells have an extra full or partial copy of chromosome 21, a diagnosis of Down syndrome results. Down syndrome occurs in one out of every 733 live births, and more than 350,000 people in the U.S. have this genetic condition. One of the most frequently occurring chromosomal abnormalities, Down syndrome affects people of all ages, races and economic levels. For more information, visit: http://www.ndss.org/

Easter Seals Project ACTIONAccessible Community Transportation in Our Nation. (or: ESPA) Established by Congress in 1988 and funded through a cooperative agreement with the U.S. Department of Transportation, Federal Transportation Administration, Easter Seals Project ACTION promotes cooperation between the transportation industry and the disability community to increase mobility for people with disabilities under the ADA and beyond. Project ACTION offers various resources, as well as training and technical assistance, in an effort to make the ADA work for everyone, everyday. http://projectaction.easterseals.com. To view projects undertaken by AUCD members in cooperation with ESPA: http://www.aucd.org/new/template/page.cfm?id=377&cmsview=yes.

EC

Early Childhood. Intervening early in the lives of disadvantaged children is assumed to provide the best opportunity to forestall later problems and to ready children for school and life. This assumption is bolstered by evidence that early childhood programs have produced long-term cognitive and social benefits for the children who enrolled in them. For more information, visit: http://www.zerotothree.org/

ECSE

Early Childhood Special Education. Special education is instruction that is specially designed to address the educational and other needs of children with disabilities, or a child experiencing developmental delays. Special education is provided free of charge through the public school system. It is available through the same law that makes early intervention services available—the Individuals with Disabilities Education Act (IDEA). Special education services are provided free of charge through the public schools. For more information, visit: http://www.nichcy.org/index.html

EDUS Department of Education. www.ed.gov. Congress established the U.S. Department of Education (ED) on May 4, 1980, in the Department of Education Organization Act (Public Law 96-88 of October 1979). The U.S. Department of Education is the agency of the federal government that establishes policy for, administers, and coordinates most federal assistance to education. OSERS is one of eight ED program offices.

EPGExternal Partners Group. The External Partners Group is a coalition of government and private sector participants who work together to enhance the mission and activities of the CDC-NCBDDD in promoting child development; preventing birth defects and developmental disorders/disabilities; and enhancing the quality of life and preventing secondary conditions among people who are living with mental or physical disabilities, or a combination thereof. http://www.cdc.gov/ncbddd/partners/default.htm

ESPAEaster Seals Project ACTION. (see Project ACTION)

Family VoicesFamily Voices is a national, grassroots clearinghouse for information and education concerning the health care of children with special health needs. www.familyvoices.org.

FAPE

Free Appropriate Public Education. FAPE is a right of all children who have disabilities in the United States. It is defined by Public Law (PL) 94-142, the EHA (now PL 101-476, IDEA) as special educational and related services at public expense (i.e. without charge); meeting the standards of approximate grade levels of the State education agency within the context of an individualized education program written with parental participation; and due process, including access to judicial review to determine that the State has complied with the Act and that the written individualized educational program is "reasonably calculated to enable the child to receive educational benefits," e.g. achieving passing marks and grade advancement. There are also FAPE stipulations in Section 504 of the 1973 Rehabilitation Act as well as in the ADA.

FC

Facilitated communication. FC is a method of communication intended to help people with communication disorders to use communication aids with their hands. The facilitator offers emotional and physical support, often steadying the user's hand, wrist or arm as the user points toward the communication device (often a picture board, speech synthesizer or keyboard) For more information, visit: http://home.vicnet.net.au/~dealcc/facil.htm

FDAThe Food and Drug Administration. FDA assures the safety of foods and cosmetics, and the safety and efficacy of pharmaceuticals, biological products, and medical devices. Established: 1906. The FDA is a public health agency of DHHS. www.fda.gov.

FERPA

Family Educational Rights and Privacy Act. FERPA is a Federal law that protects the privacy of student education records. The law applies to all schools that receive funds under an applicable program of the U.S. Department of Education (ED). FERPA gives parents certain rights with respect to their children's education records. These rights transfer to the student when he or she reaches the age of 18 or attends a school beyond the high school level. http://www.ed.gov/policy/gen/guid/fpco/ferpa/index.html

FRAXAFragile X Research Foundation. Founded in 1994 by three parents of children with Fragile X to support scientific research aimed at finding a treatment and a cure for Fragile X, FRAXA's mission is to accelerate progress toward effective treatments and ultimately a cure for Fragile X, by directly funding the most promising research. FRAXA also supports families affected by Fragile X and raises awareness of this disease.www.fraxa.org.

HFA

High Functioning Autism. While 70-80% of those diagnosed with autism also test as mentally retarded, many high functioning autistics have average or above average IQ's. High Functioning Autism (HFA) is not a clearly defined diagnosis. Rather, it is a label given when someone meets (or met as a child) the diagnostic criteria for autistic disorder but is able to speak and has an average or above average IQ. The term HFA is similar in many ways to Asperger Syndrome. http://noah-health.org/en/bns/disorders/autism/spectrum/highfunction.html

HH, HoH

Hard of Hearing. This term is used to describe a degree of hearing loss ranging from mild to profound for which a person usually receives some benefit from amplification. Most people who are hard of hearing are oralists (they communicate by using their voice), although a small number learn sign language. Usually people who are HoH participate in society by using their residual hearing with hearing aids, speech reading, and assistive devices to facilitate communication (definition from: www.drf.org/HH_dictionary/glossary.htm). For resources visit: http://www.cdhh.org/

HHSsee DHHS.

HI

Hearing Impaired. Hearing impairment happens when an individual’s hearing is affected by a disease, disorder or injury. Hearing loss can be present at birth (deaf or hard of hearing people) or develop in childhood or adulthood (deafened people). There are a great many causes of deafness and hearing impairment. The biggest single cause is age, called age-related hearing loss. http://www.nhsdirect.nhs.uk/articles/article.aspx?printPage=1&articleId=518.

HMO

Health Maintenance Organization. An HMO is a type of Managed Care Organization that provides a form of health insurance coverage in the United States that is fulfilled through hospitals, doctors, and other providers with which the HMO has a contract. Unlike traditional indemnity insurance, care provided in an HMO generally follows a set of care guidelines provided through the HMO's network of providers. Under this model, providers contract with an HMO to receive more patients and in return usually agree to provide services at a discount. http://en.wikipedia.org/wiki/Health_maintenance_organization

HRSAHealth Resources and Services Administration. Health Resources and Services Administration. HRSA provides access to essential health care services for people who are low-income, uninsured or who live in rural areas or urban neighborhoods where health care is scarce. The agency helps prepare the nation's health care system and providers to respond to bioterrorism and other public health emergencies, maintains the National Health Service Corps and helps build the health care workforce through training and education programs. HRSA administers a variety of programs to improve the health of mothers and children and serves people living with HIV/AIDS through the Ryan White CARE Act programs. HRSA also oversees the nation's organ transplantation system. Established: 1982 HRSA is a public health agency of DHHS. www.hrsa.gov.

IDEAIndividuals with Disabilities Education Act. Originally enacted by Congress in 1975 and most recently revised in December 2004, IDEA is the nation’s special education law which ensures children with disabilities have the opportunity to receive a free appropriate public education in the least restrictive environment. IDEA guides how states and school districts provide special education and related services to more than six million eligible children with disabilities. http://www.nectac.org/idea/idea.asp, http://www.nea.org/specialed/index.html. IDEA is made of:

· IDEA Part A: general provisions

· IDEA Part B: provisions relating to the education of school-aged and preschool children, the funding formula (40% of the average cost for every special education student), evaluations for services, eligibility determinations, Individualized Education Programs (IEPs) and educational placements, as well as procedural safeguards

· IDEA Part C: early intervention and other services for infants and toddlers with disabilities and their families (from birth through age 3), as well as grants to states to support these programs for infants and toddlers with disabilities.

· IDEA Part D: support for various national activities designed to improve the education of children with disabilities, including personnel preparation activities, technical assistance, and special education research.

IEP

Individualized Education Plan. An IEP describes the goals set by a team of parents and educators for a child with special needs for the school year, as well as any special supports that are needed to help achieve those goals. In most cases, the services and goals outlined in an IEP can be provided in a standard school environment or in a special resource room in the regular school. The resource room can serve a group of children with similar needs who are brought together for help. http://www.schwablearning.org/articles.asp?r=73 For resources, visit: http://www.familyvillage.wisc.edu/education/iep.html.

IFSP

Individualized Family Service Plan. An IFSP documents and guides the early intervention process for children with disabilities and their families. The IFSP is the vehicle through which effective early intervention is implemented in accordance with Part C of the Individuals with Disabilities Education Act (IDEA). It contains information about the services necessary to facilitate a child's development and enhance the family's capacity to facilitate the child's development. Through the IFSP process, family members and service providers work as a team to plan, implement, and evaluate services tailored to the family's unique concerns, priorities, and resources. http://www.birth23.org/Families/IFSP.asp.

IHSIndian Health Service. Working with tribes, the IHS provides health services to 1.6 million American Indians and Alaska Natives of more than 550 federally recognized tribes. The Indian health system includes 49 hospitals, 247 health centers, 348 health stations, satellite clinics, residential substance abuse treatment centers, Alaska Native village clinics and 34 urban Indian health programs. Established: 1921. IHS is a public health agency of DHHS. www.ihs.gov.

ISP

Individualized Service Plan. The ISP is a written personal plan, or blueprint, for a person with developmental disabilities that summarizes the help he or she wants and needs to achieve his or her own aspirations in life. This program focuses on personal planning and assembling resulting information as a written Individualized Service Plan.

LBPH

The Library for the Blind and Physically Handicapped. The LBPH provides on free loan recorded books and magazines, equipment to play the recordings, large print books, and described videos. http://clp.carnegielibrary.org/.

LD

Learning Disabilities or Learning Differences. LD affects about 15 percent of the population, and can have a profound impact on individuals and families. People with learning disabilities are just as smart than their peers, but have difficulty learning in conventional school settings. http://www.ldonline.org/

LEAHLeadership Education in Adolescent Health. Funded by the MCHB (HRSA), LEAH programs are devoted to the health and well-being of adolescents in the United States. The 7 nationwide LEAH programs educate and mentor the next generation of leaders in adolescent health who will influence public policy and public health experts, and train clinicians, investigators and educators. LEAH projects are committed to honoring diversity among young people and training health care leaders who have the capacity to develop programs, services, and interventions within the cultural context and social environments relevant to those being served. http://leah.mchtraining.net.

LENDLeadership Education in Neurodevelopmental and related Disabilities. Parent organization: AUCD. LEND programs provide long-term, graduate level interdisciplinary training to health professionals. Funded by MCHB (HRSA), LENDs develop leadership potential to improve the health status of infants, children, and adolescents with or at risk for neurodevelopmental and related disabilities and to enhance the systems of care for these children and their families. The program focuses on health conditions of mental retardation, neurodegenerative and acquired neurological disorders and multiple disabilities. 35 LEND Programs in 28 states and the District of Columbia provide this critically needed leadership and clinical training to professionals. http://www.aucd.org/new/template/page.cfm?id=6.

LDA

Learning Disabilities Association. The LDA is the largest non-profit volunteer organization advocating for individuals with learning disabilities and has over 200 state and local affiliates in 42 states and Puerto Rico. LDA's international membership of over 15,000 includes members from 27 countries around the world. The membership, composed of individuals with learning disabilities, family members and concerned professionals, advocates for the almost three million students of school age with learning disabilities and for adults affected with learning disabilities. The state and local affiliates, through their affiliation with the national LDA, work continuously for individuals with learning disabilities, their parents and the professionals who serve them. http://www.ldanatl.org/index.cfm.

LRE

Least Restrictive Environment. A LRE is the educational setting where a child with disabilities can receive a FAPE designed to meet his or her education needs while being educated with peers without disabilities in the regular educational environment to the maximum extent appropriate. Learning in least restrictive environments benefits students with and without disabilities http://www.lrecoalition.org/index.htmin so much as all children are more likely to improve their academic performance, and increase their communication and socialization skills.

MCH Block Grantsee: Title V Block Grant.

MCHBMaternal Child Health Bureau. MCHB is a bureau of HRSA, DHHS. The original Children’s Bureau was established in 1912. In 1935, the U.S. Congress enacted Title V of the Social Security Act, which authorized the Maternal and Child Health Services programs and provided a foundation and structure for assuring the health of American mothers and children. MCHB envisions a future America in which the right to grow to one's full potential is universally assured through attention to the comprehensive physical, psychological and social needs of the maternal and child health population. MCHB strives for a society where children are wanted and born with optimal health, receive quality care and are nurtured lovingly and sensitively as they mature into healthy, productive adults, and seeks a nation where there is equal access for all to quality health care in a supportive, culturally competent, family and community setting. http://mchb.hrsa.gov/.

NACDDNational Association of Councils on Developmental Disabilities. (See: DD Councils) NACDD’s mission is to provide support and assistance to member Councils in order to promote a consumer and family centered system of services and supports for individuals with developmental disabilities. www.nacdd.org.

NADS

National Association for Down Syndrome. NADS provides critical counseling and support for parents of newly diagnosed infants with Down syndrome as well as advocacy, referral and information services. In addition, NADS sponsors conferences and educational programs for parents and professionals, and conducts in-services for medical personnel and educators. Through a partnership with the Adult Down Syndrome Center, NADS delivers health, psychosocial services and therapeutic programs to teens and adults with Down syndrome. http://www.nads.org/index.htm

NASWNational Association of Social Workers. The National Association of Social Workers (NASW) is the largest membership organization of professional social workers in the world, with 153,000 members. NASW works to enhance the professional growth and development of its members, to create and maintain professional standards, and to advance sound social policies. www.naswdc.org.

NCEDCNational Community Education Directors Council. NCEDC is one of AUCD’s Councils of the Board of Directors. NCEDC serves as a focus and forum for the identification, discussion, and resolution of problems and issues regarding outreach training; function as a representative voice of the outreach training interests and concerns within the AUCD network and influences the development and implementation of national outreach training policies and initiatives. http://www.aucd.org/new/template/page.cfm?id=52.

NCHSNational Center for Health Statistics. The NCHS compiles statistical information to guide actions and policies to improve the health of America’s people. NCHS collects data from birth and death records, medical records, interview surveys, and through direct physical exams and laboratory testing. The mission of NCHS is to provide statistical information that will guide actions and policies to improve the health of the American people. As the Nation's principal health statistics agency, NCHS leads the way with accurate, relevant, and timely data. www.cdc.gov/nchs/.

NCILNational Council on Independent Living. NCIL represents over 700 organizations and individuals including: Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), individuals with disabilities, and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States. www.ncil.org.

NDRNNational Disability Rights Network. NDRN is the nonprofit membership organization for the federally mandated P&As and CAPs for individuals with disabilities. Through training and technical assistance, legal support, and legislative advocacy, the NDRN works to create a society in which people with disabilities are afforded equality of opportunity and are able to fully participate by exercising choice and self-determination. www.napas.org

NDSC

National Down Syndrome Congress. NDSC is a national advocacy organization for people with Down syndrome. NDSC provides leadership in all areas of concern related to persons with Down syndrome. In that capacity, NDSC is a major source of support and empowerment to persons with Down syndrome and their families http://www.ndsccenter.org/

NDSSNational Down Syndrome Society. The mission of NDSS is to benefit people with Down syndrome and their families through national leadership in education, research and advocacy. http://www.ndss.org/.

NHISNational Health Interview Survey. The NHIS is the principal source of information on the health of the civilian noninstitutionalized population of the United States and is one of the major data collection programs of the NCHS and has been conducted since 1960. NHIS data are used widely throughout the DHHS to monitor trends in illness and disability and to track progress toward achieving national health objectives. The main objective of the NHIS is to monitor the health of the United States population through the collection and analysis of data on a broad range of health topics. A major strength of this survey lies in the ability to display these health characteristics by many demographic and socioeconomic characteristics. http://www.cdc.gov/nchs/nhis.htm.

NICHCY

National Information Center for Children and Youth with Disabilities. NICHCY is the national information and referral center that provides information on disabilities and disability-related issues for families, educators, and other professionals. Their special focus is children and youth (birth to age 22). http://www.nichcy.org/

NICHDNational Institute of Child Health and Human Development. NICHD is part of the NIH, the biomedical research arm of the DHHS. The mission of the NICHD is to ensure that every person is born healthy and wanted, that women suffer no harmful effects from reproductive processes, and that all children have the chance to achieve their full potential for healthy and productive lives, free from disease or disability, and to ensure the health, productivity, independence, and well-being of all people through optimal rehabilitation. www.nichd.nih.gov.

NIDRRThe National Institute on Disability and Rehabilitation Research. Created in 1978, NIDRR provides leadership and support for a comprehensive program of research related to the rehabilitation of individuals with disabilities. All programmatic efforts are aimed at improving the lives of individuals with disabilities from birth through adulthood. NIDRR, RSA and OSEP are components of ED’s OSERS. http://www.ed.gov/about/offices/list/osers/nidrr/index.html.

NIHNational Institutes of Health. NIH is the world's premier medical research organization, supporting over 38,000 research projects nationwide in diseases including cancer, Alzheimer's, diabetes, arthritis, heart ailments and AIDS. NIH includes 27 separate health institutes and centers. It was established in 1887 as the Hygienic Laboratory of Staten Island, N.Y. NIH is a part of DHHS. www.nih.gov.

NINDSNational Institute of Neurological Disorders and Stroke. NINDS conducts and supports research on brain and nervous system disorders. Created by the U.S. Congress in 1950, NINDS is one of the more than two dozen research institutes and centers that comprise the NIH. NINDS has occupied a central position in the world of neuroscience for 50 years. The mission of NINDS is to reduce the burden of neurological disease - a burden borne by every age group, by every segment of society, by people all over the world. www.ninds.nih.gov.

NPIN

National Parent Information Network. NPIN is now known as the Parent to Parent program. It is a program implemented at the state level that connects parents and families of children with disabilities to share information, resources and offer support to each other. http://www.p2pusa.org/state/map_us_gif.htm

NSCHNational Survey of Children’s Health. This survey, sponsored by HRSA’s MCHB, examines the physical and emotional health of children ages 0-17 years of age.  Special emphasis is placed on factors that may relate to well-being of children, including medical homes, family interactions, parental health, school and after-school experiences, and safe neighborhoods. Data was collected between January 2003 and July of 2004 on 102,353 children ages 0-17 years old. The NSCH is a SLAITS survey. http://www.cdc.gov/nchs/about/major/slaits/nsch.htm. (NSCH Data Resource Center: http://www.nschdata.org/Content/Default.aspx.)

NSCSHCNNational Survey of Children with Special Health Care Needs. Sponsored by HRSA’s MCHB and DHHS, the primary goal of this module is to assess the prevalence and impact of special health care needs among children in all 50 States and the District of Columbia. This survey explores the extent to which CSHCN have medical homes, adequate health insurance, and access to needed services. Other topics include care coordination and satisfaction with care. Data was collected on 750 CSHCN and at least 2700 non-CSHCN per State and DC between October 2000 and April 2002 where children were under 18 years of age. The NSCHSCN is a SLAITS survey. http://www.cdc.gov/nchs/about/major/slaits/cshcn.htm. (NSCSHCN Data Center: http://www.cshcndata.org/Content/Default.aspx.)

NSIPNational Service Inclusion Project. NSIP, a CNCS training and technical assistance provider, offers training, strategic planning facilitation, and technical assistance on disability inclusion in national service. www.serviceandinclusion.org; http://www.aucd.org/new/template/page.cfm?id=23.

NTDCNational Training Directors Council. NTDC is one of AUCD’s Councils of the Board of Directors. NTDC serves as a forum for the identification, discussion, and resolution of issues affecting interdisciplinary training in AUCD and acts as a communication vehicle for the implementation of national training policies through liaison with other groups. http://www.aucd.org/new/template/page.cfm?id=102.

OSEPOffice of Special Education Programs. OSEP supports a comprehensive array of programs and projects authorized by IDEA that improve results for infants, toddlers, children and youth with disabilities. OSEP, NIDRR and RSA are components of ED’s OSERS. http://www.ed.gov/about/offices/list/osers/osep/programs.html.

OSERSOffice of Special Education and Rehabilitative Services. Within ED, OSERS supports programs designed to educate children with special needs; provides for the rehabilitation of youths and adults with disabilities; and supports research to improve the lives of individuals with disabilities, regardless of age. www.ed.gov/offices/OSERS/. OSERS has three components: NIDRR, OSEP and RSA.

P&AsProtection and Advocacy System. A nationwide network of congressionally mandated, legally based disability rights agencies. P&As have the authority to provide legal representation and other advocacy services to all people with disabilities. Parent organization: NDRN. http://www.napas.org/.

PASS

Plans for Achieving Self-Support. A PASS is a plan for the future. A plan lets a person with a disability use his/her income or other things he/she own to help him/her reach work goals. For example, he could set aside money to go to school to get specialized training for a job or to start a business. The job that he wants should allow him to earn enough to reduce or eliminate the need for benefits provided under both the Social Security and Supplemental Security Income (SSI) programs. A plan is meant to help get items, services, or skills needed to reach goals. http://www.ssa.gov/pubs/11017.html.

PCA

Personal Care Attendant. A PCA helps an individual with a disability with many of the basic daily routines such as getting in or out of bed, bathing, dressing, driving, shopping, or cleaning. The work done by the PCA allows an individual with disabilities to be more independent and live an active, productive life. The use of a PCA may allow for a family member to return to work. It could also be the deciding factor if an individual can live independently or needs to be in an institutional setting such as a nursing home. http://www.spinalcord.uab.edu/show.asp?durki=22411.

PPCPediatric Pulmonary Center. PPCs are Title V training programs funded by MCHB (HRSA). The mission of the PPCs is to develop leaders who will improve the health of children with respiratory conditions through the provision of family-centered care. All MCHB training programs aim to promote comprehensive, coordinated, family centered, and culturally sensitive systems of health care that serve the diverse needs of all families within their communities. PPC traineeships are available in pulmonary medicine, nursing, nutrition, pharmacy, respiratory care, physical therapy, and social work. http://ppc.mchtraining.net/.

RSARehabilitation Services Administration. RSA administers and supports a comprehensive array of formula and discretionary grant programs and projects that serve and assist individuals with disabilities. RSA, NIDRR and OSEP are components of ED’s OSERS. http://www.ed.gov/about/offices/list/osers/rsa/programs.html.

SABESelf Advocates Becoming Empowered. On August 2, 1991, over 800 self-advocates from across the United States and Canada voted to start a national self-advocacy organization. SABE members believe: a)people with disabilities should be treated as equals; b)people should be given the same decisions, choices, rights, responsibilities, and chances to speak up and empower themselves; c) people should be able to make new friendships and renew old friendships just like everyone else; and d) people should be able to learn from their mistakes like everyone else. www.sabeusa.org.

SAMHSASubstance Abuse and Mental Health Services Administration. SAMHSA works to improve the quality and availability of substance abuse prevention, addiction treatment and mental health services. SAMHSA provides funding through block grants to states to support substance abuse and mental health services, including treatment for more than 650,000 Americans with serious substance abuse problems or mental health problems. It helps improve substance abuse prevention and treatment services through the identification and dissemination of best practices and monitors the prevalence and incidence of substance abuse. Established: 1992. SAMHSA is a public health agency of DHHS. www.samhsa.gov.

SBASpina Bifida Association. SBAA: Spina Bifida Association of America. The SBA serves the 70,000 adults and children who live with spina bifida, the most common permanently disabling birth defect.  Since 1973, SBAA has served as the nation's only voluntary health agency dedicated to enhancing the lives of those with spina bifida and those whose lives they touch. The mission of SBA is to promote the prevention of spina bifida and to enhance the lives of all affected. www.sbaa.org.

Section 503/504

Sections of the Rehabilitation Act of 1973. Section 503 prohibits federal contractors and subcontractors from discriminating against and requires affirmative action for qualified individuals with disabilities in all aspects of employment. Section 504 prohibits discrimination on the basis of disability in programs and activities that receive federal financial assistance and in federally conducted programs. http://www.dol.gov/dol/topic/discrimination/disabilitydisc.htm

SLAITSState and Local Integrated Telephone Survey. SLAITS collects important health care data at State and local levels. This data collection mechanism was developed by the http://www.cdc.gov/nchs/slaits.htmNCHS of the CDC.  It supplements current national data collection strategies by providing in-depth State and local area data to meet various program and policy needs in an ever-changing health care system. A partial list of examples of research areas include health insurance coverage, access to care, perceived health status, utilization of services, and measurement of child well-being..

SPRANSSpecial Projects of Regional and National Significance. SPRANS funds support projects (through grants, contracts, and other mechanisms) in  research, training, genetic services and newborn screening and follow-up, hemophilia, and maternal and child health improvement.  SPRANS projects must support national needs and priorities or emerging issues, have regional or national significance and demonstrate ways to improve State systems of care for mothers and children. 15% of the Title V Block Grant is allocated for SPRANS activities. http://www.amchp.org/legislative/grantsinfo.php.

SSASocial Security Administration. The Social Security Administration was created in 1935 when President Franklin D. Roosevelt signed the Social Security Act into law. SSA pays retirement, disability and survivors benefits to workers and their families and administers the Supplemental Security Income program, as well as issues Social Security numbers. The mission of SSA is to advance the economic security of the nation's people through compassionate and vigilant leadership in shaping and managing America's Social Security programs. www.ssa.gov.

SSDISocial Security Disability Insurance. (or: Title II) SSDI is one of the largest of several Federal programs that provides assistance to people with disabilities. SSDI that pays benefits to an individual and certain members of his/her family if they are “insured”, meaning the individual has worked long enough and paid Social Security taxes. Only individuals who have a disability and meet medical criteria may qualify for benefits. SSDI is administered by SSA. http://www.ssa.gov/disability/.

SSISupplemental Security Income. (or: Title XVI) SSI is a Federal income supplement program funded by general tax revenues. It is designed to help aged, blind, and disabled people, who have little or no income; and it provides cash to meet basic needs for food, clothing, and shelter. Only individuals who have a disability and meet medical criteria may qualify for benefits. SSI is administered by SSA. http://www.ssa.gov/disability/.

TBI

Traumatic Brain Injury. TBI results from damage to brain tissue caused by an external force. Leading causes of TBI are motor vehicle accidents, acts of violence, falls, sports and recreational injuries, lightening strikes, electric shocks, and blows to the head.  TBI can occur without any outward physical evidence of injury or trauma. Memory mood and fatigue are common complaints of brain injury patients. Intellectual dullness and mental rigidity are obvious signs of brain injury. Personality changes are common, and rapid mood swings alternate with waxing and waning energy levels. Taken individually, such impairments might not amount to much.  However, such impairments usually appear in groups or clusters. In many cases the impairments are widespread and disrupt many brain systems. http://www.headinjury.com/tbitypes.htm#tauamatic.

TDD

Telecommunication Device for the Deaf. A TDD, sometimes known as TTY for Teletypewriter or TT for Text Telephone, is a device used by people with hearing and speech impairments who cannot use a standard telephone. http://www.ualr.edu/dssdept/tdd.htm.

Title II(see: SSDI)

Title VTitle V of the Social Security Act is administered by HRSA, Public Health Service, DHHS. The purpose of Title V is to improve the health of all mothers and children consistent with the applicable health status goals and national health objectives established by the Secretary under the Public Health Service Act. Activities carried out under Title V are funded through the Title V Block Grant. http://www.socialsecurity.gov/OP_Home/ssact/title05/0500.htm.

Title V Block Grant(or: the MCH Block Grant) The mission of the Maternal and Child Health (MCH) Block Grant Program, as authorized under Title V of the Social Security Act, is to improve the health of all mothers, children, and their families.  Created as a partnership with State MCH programs and with broad State discretion, State Title V programs use appropriated formula grant funds for:  capacity and systems building, public information and education, knowledge development, outreach and program linkage, technical assistance, provider training, evaluation, support for newborn screening, and genetic services, lead poisoning and injury prevention, additional support services for children with special health care needs, and promotion of health and safety in child care settings.  Section 502 of the Social Security Act states that of the amounts appropriated, up to $600,000,000, 85% is for allocation to the States, and 15 % is for Special Projects of Regional and National Significance (SPRANS) activities.  Any amount appropriated in excess of $600,000,000 is distributed as follows:  12.75% is for Community Integrated Service Systems (CISS) activities; of the remaining amount, 85% is for allocation to the States, and 15% is for SPRANS activities. http://www.amchp.org/legislative/grantsinfo.php.

Title XVI(see: SSI)

TTY

(see: TDD)

UCEDD

University Center for Excellence in Developmental Disabilities. Parent organization: AUCD. Since 1963, UCEDDs have been working to accomplish a shared vision that foresees a nation in which all Americans, including Americans with disabilities, participate fully in their communities. Independence, productivity, and community inclusion are key components of this vision. Funded in part by ADD, Sixty-seven UCEDDs in every state and territory are located in a university setting. Centers are in a unique position to facilitate the flow of disability-related information between community and university. Centers work with people with disabilities, members of their families, state and local government agencies, and community providers in projects that provide training, technical assistance, service, research, and information sharing, with a focus on building the capacity of communities to sustain all their citizens. Centers have played key roles in every major disability initiative over the past four decades. Many issues, such as early intervention, health care, community-based services, inclusive and meaningful education, transition from school to work, employment, housing, assistive technology, and transportation have been directly benefited by the services, research, and training provided by UCEDDs. http://www.aucd.org/new/template/page.cfm?id=24.

UCP

United Cerebral Palsy. For more than 55 years, UCP has been committed to change and progress for persons with disabilities. The national organization and its nationwide network of affiliates strive to ensure the inclusion of persons with disabilities in every facet of society—from the Web to the workplace, from the classroom to the community. As one of the largest health charities in America, the mission of United Cerebral Palsy is to advance the independence, productivity and full citizenship of people with disabilities through an affiliate network.

UCP affiliates serve more than 170,000 children and adults with disabilities and their families every day. Our affiliates provide services such as housing, therapy, assistive technology training, early intervention programs, individual and family support, social and recreation programs, community living, state and local referrals, employment assistance and advocacy. Each affiliate offers a range of services tailored to its community's needs.

The United Cerebral Palsy National Office, located in Washington, D.C., provides direct support to the affiliates via fundraising, marketing and communications, best practices, and programmatic support to name a few. We also serve people with disabilities and their families through the development of forward-thinking programs, information and referral service, legislative advocacy, technology initiatives and research. www.ucp.org.

VI

Visual Impairment. People with VI include people who have never had any visual function, those who had normal vision for some years before becoming gradually or suddenly partially or totally blind, those with disabilities in addition to the visual loss, those with selective impairments of parts of the visual field, and those with a general degradation of acuity across the visual field.

VR

Vocational Rehabilitation. VR agencies are experts in job placement services and networking with employers. Each state has devised practices that are useful for their regional industries, geographic profile and demographics. http://www.ed.gov/rschstat/research/pubs/vrpractices/featured.html, or for state programs: http://www.jan.wvu.edu/SBSES/VOCREHAB.HTM.