Intellectual Disabilities, Intellectual Disabilities, Intellectual Disabilities, Intellectual Disabilities, Intellectual Disabilities, Intellectual Disabilities, Intellectual Disabilities,

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    Intellectual

    Disabilities

    WWWWWhat Causes anhat Causes anhat Causes anhat Causes anhat Causes an

    Intellectual Disability?Intellectual Disability?Intellectual Disability?Intellectual Disability?Intellectual Disability?

    Doctors have found manycauses of intellectual disabilities.The most common are:

    Genetic conditions.Sometimesan intellectual disability iscaused by abnormal genesinherited from parents, errorswhen genes combine, or otherreasons. Examples of geneticconditions are Down syn-drome, fragile X syndrome,and phenylketonuria (PKU).

    Problems during pregnancy.Anintellectual disability can

    result when the baby does not

    NICHCY Disability Fact Sheet #8 January 2011

    Matthews StoryMatthews StoryMatthews StoryMatthews StoryMatthews Story

    Matt is 15 years old. BecauseMatt has an intellectual disabil-ity, he has been receiving specialeducation services since elemen-tary school. These services have

    helped him tremendously,because they are designed to fithis special learning needs.

    Last year he started highschool. He, his family, and theschool took a good hard look atwhat he wants to do whensecondary school is over. Doeshe want more education? A job?Does he have the skills he needsto live on his own?

    Answering these questionshas helped Matt and the schoolplan for the future. Hes alwaysbeen interested in the outdoors,in plants, and especially in trees.He knows all the tree names andcan recognize them by theirleaves and bark. So this year heslearning about jobs like forestry,landscaping, and groundsmaintenance. Next year he hopesto get a part-time job. Heslearning to use public transporta-tion, so hell be able to get toand from the job.

    is theNational Dissemination Centerfor Children with Disabilities.

    NICHCY

    1825 Connecticut Avenue N.W.Washington, DC 200091.800.695.0285 (Voice / TTY)202.884.8200 (Voice / TTY)

    [email protected]://nichcy.org

    Having an intellectual disabil-ity makes it harder for Matt tolearn new things. He needs thingsto be very concrete. But hesdetermined. He wants to workoutside, maybe in the park serviceor in a greenhouse, and hes

    getting ready!

    WWWWWhathathathathat are anare anare anare anare an

    Intellectual DisabilityIntellectual DisabilityIntellectual DisabilityIntellectual DisabilityIntellectual Disability?????

    Intellectual disabilityis a termused when a person has certainlimitations in mental functioningand in skills such as communicat-ing, taking care of him or herself,and social skills. These limitationswill cause a child to learn anddevelop more slowly than atypical child.

    Children with intellectualdisabilities (sometimes calledcognitive disabilitiesor mentalretardation) may take longer tolearn to speak, walk, and take careof their personal needs such asdressing or eating. They are likelyto have trouble learning inschool. They willlearn, but it will

    take them longer. There may besome things they cannot learn.

    Disability Fact Sheet #8 (FS8)

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    develop inside the motherproperly. For example, theremay be a problem with theway the babys cells divide asit grows. A woman whodrinks alcohol or gets aninfection like rubella duringpregnancy may also have ababy with an intellectualdisability.

    Problems at birth. If a baby hasproblems during labor andbirth, such as not gettingenough oxygen, he or she may

    have an intellectual disability.

    Health problems.Diseases likewhooping cough, the measles,or meningitis can causeintellectual disabilities. Theycan also be caused by extrememalnutrition (not eatingright), not getting enoughmedical care, or by beingexposed to poisons like leador mercury.

    An intellectual disability isnot a disease. You cant catch anintellectual disability fromanyone. Its also not a type ofmental illness, like depression.There is no cure for intellectual

    disabilities. However, mostchildren with an intellectualdisability can learn to do manythings. It just takes them moretime and effort than otherchildren.

    How Common areHow Common areHow Common areHow Common areHow Common areIntellectual Disabilities?Intellectual Disabilities?Intellectual Disabilities?Intellectual Disabilities?Intellectual Disabilities?

    Intellectual disability is themost common developmentaldisability.1Approximately 6.5million people in the UnitedStates have an intellectualdisability.2 More than 545,000children (ages 6-21) have somelevel of intellectual disability andreceive special education services

    in public school under thiscategory in IDEA, the nationsspecial education law.3 In fact, 1in every 10 children who needspecial education have someform of intellectual disability.4

    WWWWWhat are the Signs ofhat are the Signs ofhat are the Signs ofhat are the Signs ofhat are the Signs of

    Intellectual Disability?Intellectual Disability?Intellectual Disability?Intellectual Disability?Intellectual Disability?

    There are many signs of an

    intellectual disability. For ex-ample, children with an intellec-tual disability may:

    sit up, crawl, or walk laterthan other children;

    learn to talk later, or havetrouble speaking,

    find it hard to rememberthings,

    not understand how to pay

    for things,

    have trouble understandingsocial rules,

    have trouble seeing theconsequences of their actions,

    have trouble solving prob-lems, and/or

    have trouble thinkinglogically.

    How are IntellectualHow are IntellectualHow are IntellectualHow are IntellectualHow are Intellectual

    Disabilities Diagnosed?Disabilities Diagnosed?Disabilities Diagnosed?Disabilities Diagnosed?Disabilities Diagnosed?Intellectual disabilities are

    diagnosed by looking at twomain things. These are:

    the ability of a persons brainto learn, think, solve prob-lems, and make sense of theworld (called IQ or intellectualfunctioning); and

    whether the person has the

    skills he or she needs to liveindependently (called adaptivebehavior, or adaptive function-ing).

    Intellectual functioning, orIQ, is usually measured by a testcalled an IQ test. The averagescore is 100. People scoringbelow 70 to 75 are thought tohave an intellectual disability. Tomeasure adaptive behavior,

    professionals look at what achild can do in comparison toother children of his or her age.Certain skills are important toadaptive behavior. These are:

    daily living skills, such asgetting dressed, going to thebathroom, and feeding onesself;

    communication skills, such asunderstanding what is saidand being able to answer;

    social skills with peers, familymembers, adults, and others.

    To diagnose an intellectualdisability, professionals look atthe persons mental abilities (IQ)and his or her adaptive skills.

    NICHCY: http://nichcy.org 2 Intellectual Disabilities (FS8)

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    Both of these are highlighted inthe definition of this disability inthe box on this page. Thisdefinition comes from theIndividuals with DisabilitiesEducation Act (IDEA). IDEA isthe federal law that guides how

    early intervention and specialeducation services are providedto infants, toddlers, children, andyouth with disbilities.

    Providing services to helpindividuals with intellectualdisabilities has led to a newunderstanding of how we definethe term. After the initial diagno-sis is made, we look at a personsstrengths and weaknesses. Wealso look at how much supportor help the person needs to getalong at home, in school, and inthe community. This approachgives a realistic picture of eachindividual. It also recognizes thatthe picture can change. As theperson grows and learns, his orher ability to get along in theworld grows as well.

    Help forHelp forHelp forHelp forHelp for

    Babies and TBabies and TBabies and TBabies and TBabies and Toddlersoddlersoddlersoddlersoddlers

    When a baby is born with anintellectual disability, his or herparents should know that theresa lot of help availableandimmediately. Shortly after thediagnosis of ID is confirmed,parents will want to get in touchwith the early interventionsystem in their community. Welltell you how in a moment.

    Early intervention is a systemof services designed to helpinfants and toddlers with dis-abilities (until their 3rd birthday)and their families. Its mandatedby IDEA. Staff work with thechilds family to develop what isknown as an Individualized Family

    Services Plan, or IFSP. The IFSPwill describe the childs uniqueneeds as well as the services he orshe will receive to address thoseneeds. The IFSP will also empha-size the unique needs of thefamily, so that parents and otherfamily members will know howto help their young child withintellectual disability. Earlyintervention services may beprovided on a sliding-fee basis,

    meaning that the costs to thefamily will depend upon theirincome.

    To access early interventionservices in your area, consultNICHCYs State Resource Sheetforyour state. Its available online at:http://nichcy.org/state-organiza-tion-search-by-state

    There, youll find a listing forearly intervention under the first

    section, State Agencies. Theagency listed will be able to putyou in contact with the earlyintervention program in yourcommunity.

    To learn more about earlyintervention, including how towrite the IFSP, visit NICHCY at:

    http://nichcy.org/babies/over-view/

    Help forHelp forHelp forHelp forHelp for

    School-Aged ChildrenSchool-Aged ChildrenSchool-Aged ChildrenSchool-Aged ChildrenSchool-Aged Children

    Just as IDEA requires thatearly intervention be madeavailable to babies and toddlerswith disabilities, it requires thatspecial education and relatedservicesbe made available free

    of charge to every eligible childwith a disability, includingpreschoolers (ages 3-21). Theseservices are specially designed toaddress the childs individualneeds associated with the dis-abilityin this case, an intellec-tual disability.

    School staff will work withthe childs parents to develop anIndividualized Education Program,

    or IEP. The IEP is similar to anIFSP. It describes the childsunique needs and the servicesthat have been designed to meetthose needs. Special educationand related services are providedat no cost to parents.

    NICHCY: http://nichcy.org 3 Intellectual Disabilities (FS8)

    Definition of Intellectual DisabilityDefinition of Intellectual DisabilityDefinition of Intellectual DisabilityDefinition of Intellectual DisabilityDefinition of Intellectual Disability

    under IDEAunder IDEAunder IDEAunder IDEAunder IDEA

    Until Rosas Law was signed into law by President Obama inOctober 2010, IDEA used the term mental retardation insteadof intellectual disability. Rosas Law changed the term to be

    used in future to intellectual disability. The definition itself,however, did not change. Accordingly, intellectual disability isdefined as...

    ...significantly subaverage general intellectual functioning,existing concurrently with deficits in adaptive behavior andmanifested during the developmental period, that adverselyaffects a childs educational performance.

    [34 CFR 300.8(c)(6)]

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    NICHCY: http://nichcy.org 4 Intellectual Disabilities (FS8)

    To access special educationservices for a school-aged childin your area, get in touch withyour local public school system.Calling the elementary school inyour neighborhood is an excel-

    lent place to start.There is a lot to know about

    the special education process,much of which you can learn atNICHCY, which offers a widerange of publications on thetopic. Enter our special educa-tion information at:http://nichcy.org/schoolage/

    EducationalEducationalEducationalEducationalEducational

    ConsiderationsConsiderationsConsiderationsConsiderationsConsiderations

    A child with an intellectualdisability can do well in schoolbut is likely to need the individu-alized help thats available asspecial education and relatedservices. The level of help andsupport thats needed willdepend upon the degree ofintellectual disability involved.

    General education. Itsimportant that students withintellectual disabilities be in-volved in, and make progress in,the general education curricu-lum. Thats the same curriculumthats learned by those withoutdisabilities. Be aware that IDEA

    does not permit a student to beremoved from education in age-appropriate general educationclassrooms solely because he orshe needs modifications to bemade in the general educationcurriculum.

    Supplementary aids andservices. Given that intellectualdisabilities affect learning, itsoften crucial to provide supportsto students with ID in theclassroom. This includes makingaccommodationsappropriate tothe needs of the student. It alsoincludes providing what IDEAcalls supplementary aids andservices. Supplementary aidsand services are supports thatmay include instruction, person-nel, equipment, or other accom-modations that enable childrenwith disabilities to be educatedwith nondisabled children to themaximum extent appropriate.

    Thus, for families and teach-ers alike, its important to knowwhat changes and accommoda-tions are helpful to students withintellectual disabilities. These

    need to be discussed by the IEPteam and included in the IEP, ifappropriate.

    Some common changes thathelp students with intellectualdisabilities are listed in the Tipsfor Teachers box on the nextpage. The organizations listed inthe Resource Section also offer agreat deal of information onways to help children with

    intellectual disabilities learn andsucceed in school. And you canalso consult NICHCY, beginningonline at: http://nichcy.org/schoolage/accommodations/

    Adaptive skills. Many chil-dren with intellectual disabilitiesneed help with adaptive skills,which are skills needed to live,work, and play in the commu-nity. Teachers and parents canhelp a child work on these skills

    at both school and home. Someof these skills include:

    communicating with others;

    taking care of personal needs(dressing, bathing, going tothe bathroom);

    health and safety;

    home living (helping to setthe table, cleaning the house,or cooking dinner);

    social skills (manners, know-ing the rules of conversation,getting along in a group,playing a game);

    reading, writing, and basicmath; and

    as they get older, skills thatwill help them in the work-place.

    Transition planning.Itsextremely important for familiesand schools to begin planningearly for the students transitioninto the world of adulthood.Because intellectual disabilityaffects how quickly and how wellan individual learns new infor-mation and skills, the soonertransition planning begins, themore can be accomplishedbefore the student leaves second-

    ary school.

    IDEA requires that, at thelatest, transition planning forstudents with disabilities mustbegin no later than the first IEPto be in effect when they turn 16.The IEP teams of many studentswith intellectual disabilities feel

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    NICHCY: http://nichcy.org 5 Intellectual Disabilities (FS8)

    TTTTTips for Tips for Tips for Tips for Tips for Teacherseacherseacherseacherseachers

    Learn as much as you can aboutintellectual disability. The organiza-tions listed on this page will helpyou identify techniques and strate-

    gies to support the student educa-tionally. Weve also listed somestrategies below.

    Recognize that you can make anenormous difference in this students

    life! Find out what the students strengths andinterests are, and emphasize them. Createopportunities for success.

    If you are not part of the students IEP team,ask for a copy of his or her IEP. The studentseducational goals will be listed there, as well

    as the services and classroom accommoda-tions he or she is to receive. Talk to others inyour school (e.g., special educators), asnecessary. They can help you identify effectivemethods of teaching this student, ways toadapt the curriculum, and how to address thestudents IEP goals in your classroom.

    Be as concrete as possible. Demonstrate whatyou mean rather than giving verbal directions.Rather than just relating new informationverbally, show a picture. And rather than just

    showing a picture, provide the student withhands-on materials and experiences and theopportunity to try things out.

    Break longer, new tasks into small steps.Demsonstrate the steps. Have the student dothe steps, one at a time. Provide assistance, asnecessary.

    Give the student immediate feedback.

    Teach the student life skills such as dailyliving, social skills, and occupational aware-

    ness and exploration, as appropriate. Involvethe student in group activities or clubs.

    Work together with the students parents andother school personnel to create and imple-ment an IEP tailored to meet the studentsneeds. Regularly share information about howthe student is doing at school and at home.

    that its important for these students to beginearlier than that. And they do.

    For more information, visit NICHCYsTransition pages, beginning at: http://nichcy.org/schoolage/transitionadult/

    ReferencesReferencesReferencesReferencesReferences1National Center on Birth Defects andDevelopmental Disabilities. (2005). Intellec-tual disability. Available online at:www.cdc.gov/ncbddd/dd/mr3.htm

    2The Arc. (2009). Introduction to intellectual disabili-ties. Available online at: http://www.thearc.org/page.aspx?pid=2448

    3U.S. Department of Education. (2010).29thannual report to Congress on the implementation of the

    Individuals with Disabilities Education Act, 2007(Vol.2). Washington, DC: Autor. Available online at:http://www2.ed.gov/about/reports/annual/osep/index.html

    4Ibid.

    OrganizationsOrganizationsOrganizationsOrganizationsOrganizations

    The Arc of the United States800.433.5255 | [email protected] | www.thearc.orgFind a local chapter near you:

    http://www.thearc.org/page.aspx?pid=2437

    American Association on Intellectual andDevelopmental Disabilities800.424.3688 | www.aaidd.org/The AAIDD definition manual contains the worldsmost current and authoritative information onintellectual disability, including best practiceguidelines on diagnosing and classifying intellec-tual disability and developing a system of supportsfor people living with an intellectual disability.

    Division on Autism and DevelopmentalDisabilities(DADD)This division of the Council for ExceptionalChildren offers many publications and journals forprofessionals. http://daddcec.org/

    Tips for Parents appears on the next page.

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    This publication is copyright free. Readers are encouraged to copy and share it, but please credit theNational Dissemination Center for Children with Disabilities (NICHCY).

    This publication is made possible through Cooperative Agreement #H326N080003 between FHI 360and the Office of Special Education Programs, U.S. Department of Education. The contents of this docu-ment do not necessarily reflect the views or policies of the Department of Education, nor does mention oftrade names, commercial products, or organizations imply endorsement by the U.S. Government.

    FS8January 2011

    TTTTTips for Pips for Pips for Pips for Pips for Parentsarentsarentsarentsarents

    Learn about intellectual disability. Themore you know, the more you canhelp yourself and your child. See thelist of organizations on page 5.

    Be patient, be hopeful. Your child, likeevery child, has a whole lifetime tolearn and grow.

    Encourage independence in your child. Forexample, help your child learn daily careskills, such as dressing, feeding him orherself, using the bathroom, and grooming.

    Give your child chores. Keep her age,attention span, and abilities in mind. Breakdown jobs into smaller steps. For example,

    if your childs job is to set the table, first askher to get the right number of napkins.Then have her put one at each familymembers place at the table. Do the samewith the utensils, going one at a time. Tellher what to do, step by step, until the job isdone. Demonstrate how to do the job. Helpher when she needs assistance.

    Give your child frequent feedback. Praiseyour child when he or she does well. Buildyour childs abilities.

    Find out what skills your child is learningat school. Find ways for your child to applythose skills at home. For example, if theteacher is going over a lesson about money,

    take your child to the supermarket withyou. Help him count out the money topay for your groceries. Help him countthe change.

    Find opportunities in your commu-nity for social activities, such as scouts,recreation center activities, sports, and

    so on. These will help your child buildsocial skills as well as to have fun.

    Talk to other parents whose children havean intellectual disability. Parents can sharepractical advice and emotional support.Visit NICHCYs State-Specific Resourcespage and find a parent group near you.Look in the Disability-Specific section,

    under intellectual disabilities. StateSheets are online at:http://nichcy.org/state-organization-search-by-state

    Meet with the school and develop anIEP to address your childs needs. Keep intouch with your childs teachers. Offersupport. Find out how you can supportyour childs school learning at home.

    Take pleasure in your beautiful one. Hesheis a treasure. Learn from your child,

    too. Those with intellectual disabilitieshave a special light withinlet it shine.