8. Eligibility for Special Education Services A

Home , Lisp, Stephen Street, United Cerebral Palsy

8. Eligibility for Special Education Services a. Fact Sheets on i. ADHD Fact Sheet on Disabilities from NICHCY (http://nichcy.org/disability) ii. Autism Spectrum Disorders Fact Sheet iii. Blindness/Visual Impairment Fact Sheet iv. Cerebral Palsy Fact Sheet v. Deaf-Blindness Fact Sheet vi. Deafness and Hearing Loss Fact Sheet vii. Developmental Delay Fact Sheet viii. Down Syndrome Fact Sheet ix. Emotional Disturbance Fact Sheet x. Epilepsy Fact Sheet xi. Intellectual Disabilities Fact Sheet xii. Learning Disabilities Fact Sheet xiii. Other Health Impairment Fact Sheet xiv. Traumatic Brain Injury Fact Sheet b. Disability Worksheets for Eligibility for Special Education (from OSSE/DCPS) i. Other Health Impairment Disability Worksheet ii. Specific Learning Disability Worksheet iii. Emotional Disturbance Disability Worksheet

Attention-Deficit/ Hyperactivity Disorder

NICHCY Disability Fact Sheet #19 Updated March 2012

break down his lessons into gets to choose something fun several parts. Then they have he’d like to do. Having a him do each part one at a child with AD/HD is still a Mario’s Story time. This helps Mario keep challenge, but things are his attention on his work. looking better. Mario is 10 years old. When he was 7, his family At home, things have learned he had AD/HD. At changed, too. Now his What is AD/HD? the time, he was driving parents know why he’s so everyone crazy. At school, he active. They are careful to Attention-deficit/hyperac- couldn’t stay in his seat or praise him when he does tivity disorder (AD/HD) is a keep quiet. At home, he something well. They even condition that can make it didn’t finish his homework have a reward program to hard for a person to sit still, or his chores. He did scary encourage good behavior. He control behavior, and pay things, too, like climb out of earns “good job points” that attention. These difficulties his window onto the roof they post on a wall chart. usually begin before the and run across the street After earning 10 points he person is 7 years old. How- without looking. ever, these behaviors may not be noticed until the child is Things are much better older. now. Mario was tested by a trained professional to find Doctors do not know just out what he does well and what causes AD/HD. How- what gives him trouble. ever, researchers who study the brain are coming closer His parents and teachers is the came up with ways to help to understanding what may National Dissemination Center cause AD/HD. They believe him at school. Mario has for Children with Disabilities. trouble sitting still, so now that some people with AD/ HD do not have enough of he does some of his work NICHCY certain chemicals (called standing up. He’s also the 1825 Connecticut Avenue N.W. neurotransmitters) in their student who tidies up the Washington, DC 20009 brain. These chemicals help room and washes the 1.800.695.0285 (Voice / TTY) the brain control behavior. chalkboard. His teachers 202.884.8200 (Voice / TTY) [email protected] http://nichcy.org

Disability Fact Sheet #19 (FS19) Parents and teachers do not cause AD/HD. • get distracted easily; Still, there are many things that both can do to and help a child with AD/HD. • lose things such as toys, How Common is AD/HD? school work, and books. As many as 5 out of every 100 children in (APA, 2000, school may have AD/HD. Boys are three times pp. 85-86) more likely than girls to have AD/HD. Hyperactive-impulsive type. Being too active What Are the Signs of AD/HD? is probably the most visible sign of AD/HD. The hyperactive child is “always on the go.” (As There are three main signs, or symptoms, of he or she gets older, the level of activity may go AD/HD. These are: down.) These children also act before thinking (called impulsivity). For example, they may run • problems with paying attention, across the road without looking or climb to the top of very tall trees. They may be surprised to • being very active (called hyperactivity), and find themselves in a dangerous situation. They may have no idea of how to get out of the • acting before thinking (called impulsivity). situation.

More information about these symptoms is Hyperactivity and impulsivity tend to go listed in a book called the Diagnostic and together. Children with the hyperactive-impul- Statistical Manual of Mental Disorders (DSM), sive type of AD/HD often may: which is published by the American Psychiatric Association (2000). Based on these symptoms, • fidget and squirm; three types of AD/HD have been found: • get out of their chairs when they’re not • inattentive type, where the person can’t seem supposed to; to get focused or stay focused on a task or activity; • run around or climb constantly;

• hyperactive-impulsive type, where the person • have trouble playing quietly; is very active and often acts without thinking; and • talk too much;

• combined type, where the person is inatten- • blurt out answers before questions have tive, impulsive, and too active. been completed;

Inattentive type. Many children with AD/ • have trouble waiting their turn; HD have problems paying attention. Children • interrupt others when they’re talking; and with the inattentive type of AD/HD often: • butt in on the games others are playing. • do not pay close attention to details; (APA, 2000, p. 86) • can’t stay focused on play or school work; Combined type. Children with the com- • don’t follow through on instructions or bined type of AD/HD have symptoms of both finish school work or chores; of the types described above. They have problems with paying attention, with hyperactivity, • can’t seem to organize tasks and activities; and with controlling their impulses.

NICHCY: http://nichcy.org 2 AD/HD (FS19) Of course, from time to time, all children What About School? are inattentive, impulsive, and too active. With children who have AD/HD, these behaviors are School can be hard for children with AD/ the rule, not the exception. HD. Success in school often means being able to pay attention and control behavior and These behaviors can cause a child to have impulse. These are the areas where children real problems at home, at school, and with with AD/HD have trouble. friends. As a result, many children with AD/HD will feel anxious, unsure of themselves, and There are many ways the school can help depressed. These feelings are not symptoms of students with AD/HD. Some students may be AD/HD. They come from having problems eligible to receive special education services again and again at home and in school. under the Individuals with Disabilities Educa- tion Act (IDEA). AD/HD is specifically men- How Do You Know if a Child tioned under the category of “Other Health Impairment” (OHI). We’ve included the IDEA’s Has AD/HD? definition of OHI in the box below.

When a child shows signs of AD/HD, he or Despite the fact that AD/HD is specifically she needs to be evaluated by a trained profes- mentioned in IDEA’s definition of OHI, some sional. This person may work for the school students will not be eligible for services under system or may be a professional in private IDEA. Many factors go into determining eligi- practice. A complete evaluation is the only way bility, including state policies and definitions to know for sure if the child has AD/HD. It is and the fact that a student’s educational perfor- also important to: mance must be adversely affected. However, students who are found not eligible under • rule out other reasons for the child’s behav- IDEA may be eligible for services under a ior, and different law, Section 504 of the Rehabilitation Act of 1973. • find out if the child has other disabilities along with AD/HD.

What About Treatment? Definition of “Other Health Impairment”

There is no quick treatment for Many students with AD/HD may qualify for special education AD/HD. However, the symptoms of services under the “Other Health Impairment” category within the AD/HD can be managed. It’s impor- Individuals with Disabilities Education Act (IDEA). IDEA defines tant that the child’s family and “other health impairment” as... teachers: “...having limited strength, vitality, or alertness, including a • find out more about AD/HD; heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environ- • learn how to help the child ment, that— manage his or her behavior; (a) is due to chronic or acute health problems such as • create an educational program asthma, attention deficit disorder or attention deficit hyper- that fits the child’s individual activity disorder, diabetes, epilepsy, a heart condition, hemo- needs; and philia, lead poisoning, leukemia, nephritis, rheumatic fever, sickle cell anemia, and Tourette syndrome; and • provide medication, if parents and the doctor feel this would (b) adversely affects a child’s educational performance.” help the child. 34 Code of Federal Regulations §300.8(c)(10)

NICHCY: http://nichcy.org 3 AD/HD (FS19) Regardless of the eligibility determination, Yes, it can be very helpful to read more the school and the child’s parents need to meet about AD/HD. This has been just a brief over- and talk about what special help the student view. The Resources for You section (beginning needs. on the next page) includes a range of materials you might explore—which will, of course, lead Most students with AD/HD are helped by you to still more! supports or changes in the classroom (called adaptations). Some common changes that help students with AD/HD are listed in the “Tips for Teachers” box on page 5. “Tips for Parents” are given below.

Tips for Parents

❑ Learn about AD/HD. The more you techniques in many books. See the know, the more you can help yourself Resources for You section. and your child. Start with the info we’ve listed in the Resources for You section, ❑ Talk with your doctor about whether beginning on page 5. medication will help your child.

❑ Praise your child when he or she does ❑ Pay attention to your child’s mental well. Build your child’s abilities. Talk health (and your own!). Be open to about and encourage his or her strengths counseling. It can help you deal with the and talents. challenges of raising a child with AD/ HD. It can help your child deal with ❑ Be clear, be consistent, be positive. Set frustration, feel better about himself or clear rules for your child. Tell your child herself, and learn more about social what he or she should do, not just what skills. he shouldn’t do. Be clear about what will happen if your child does not follow the ❑ Talk to other parents whose children rules. Have a reward program for good have AD/HD. Parents can share practical behavior. Praise your child when he or advice and emotional support. Call she shows the behaviors you like. NICHCY to find out how to find parent groups near you. ❑ Learn about strategies for managing your child’s behavior. These include valuable ❑ Meet with the school and develop an techniques such as: charting, having a educational plan to address your child’s reward program, ignoring behaviors, needs. Both you and your child’s teach- natural consequences, logical conse- ers should get a written copy of this quences, and time-out. Using these plan. strategies will lead to more positive ❑ behaviors and cut down on problem Keep in touch with your child’s teacher. behaviors. You can read about these Tell the teacher how your child is doing at home. Ask how your child is doing in school. Offer support.

NICHCY: http://nichcy.org 4 AD/HD (FS19) Resources for You

CHADD | Children and Adults with Attention National Resource Center on ADHD Deficit/Hyperactivity Disorder A program of CHADD 1.800.233.4050 1.800.233.4050 http://www.chadd.org • Website in English http://www.help4adhd.org/ index.cfm?varLang=en

• Website in Spanish: http://www.help4adhd.org/ index.cfm?varLang=es

Continued on the next page

Tips for Teachers

❑ Learn more about AD/HD. The re- ❑ Help the student channel his or her sources and organizations listed in this physical activity (e.g., let the student do publication will help you identify some work standing up or at the board). behavior support strategies and effective Provide regularly scheduled breaks. ways to support the student educationally. We’ve listed some strategies below. ❑ Make sure directions are given step by step, and that the student is following ❑ Figure out what specific things are hard the directions. Give directions both for the student. For example, one stu- verbally and in writing. Many students dent with AD/HD may have trouble with AD/HD also benefit from doing starting a task, while another may have the steps as separate tasks. trouble ending one task and starting the next. Each student needs different help. ❑ Let the student do work on a computer.

❑ Post rules, schedules, and assignments. ❑ Work together with the student’s parents Clear rules and routines will help a to create and implement an educational student with AD/HD. Have set times for plan tailored to meet the student’s specific tasks. Call attention to changes needs. Regularly share information in the schedule. about how the student is doing at home and at school. ❑ Show the student how to use an assignment book and a daily schedule. Also ❑ Have high expectations for the student, teach study skills and learning strategies, but be willing to try new ways of doing and reinforce these regularly. things. Be patient. Maximize the student’s chances for success.

NICHCY: http://nichcy.org 5 AD/HD (FS19) Resources for You

For Parents

How do you know if your child has ADHD? 2011, U.S. Food and Drug Administration Includes a section on “FDA-Approved Drugs to Treat ADHD in Children.” http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm269188.htm

How is parenting children with ADHD different? http://tlc.howstuffworks.com/family/parenting-children-with-adhd.htm

Attention-deficit/hyperactivityi disorder: What should you know? http://www.cdc.gov/ncbddd/adhd/

For Schools

How can teachers help students with AD/HD? http://www.educationworld.com/a_issues/issues148c.shtml

Helping children with AD/HD succeed at school. http://helpguide.org/mental/adhd_add_teaching_strategies.htm

AD/HD instructional strategies and practices. From the U.S. Department of Education. http://www2.ed.gov/rschstat/research/pubs/adhd/adhd-teaching-2006.pdf

How to help and support impulsive students http://specialed.about.com/od/behavioremotiona1/p/impulsive.htm

Strategies for teaching students with attention deficit disorder. http://www.as.wvu.edu/~scidis/add.html

NICHCY Disability Fact Sheet #9 Updated March 2012

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

NICHCY: http://nichcy.org 6 AD/HD (FS19) Autism Spectrum Disorders

A publication of NICHCY Disability Fact Sheet #1 June 2010 Ryan’s Story

Ryan is a healthy, active two- After talking with their family mental Disorders”—a category year-old, but his parents are doctor, Ryan’s parents call the that’s often referred to as simply concerned because he doesn’t Early Intervention office in their the “autism spectrum.” seem to be doing the same community and make an things that his older sister did at appointment to have Ryan As painful as this is for his this age. He’s not really talking evaluated. parents to learn, the early yet, although sometimes he intervention staff encourage repeats, over and over, words When the time comes, Ryan them to learn more about the that he hears others say. He is seen by several professionals autism spectrum. By getting an doesn’t use words to communi- who play with him, watch him, early diagnosis and beginning cate, though. It seems he just and ask his parents a lot of treatment, Ryan has the best enjoys the sounds of them. questions. When they’re all chance to grow and develop. Of Ryan spends a lot of time done, Ryan is diagnosed with course, there’s a long road playing by himself. He has a autism, one of the five disorders ahead, but his parents take few favorite toys, mostly cars, or listed under an umbrella cat- comfort in knowing that they anything with wheels on it! And egory of “Pervasive Develop- aren’t alone and they’re getting sometimes, he spins himself Ryan the help he needs. around as fast as he does the wheels on his cars. Ryan’s What are the Characteristics parents are really concerned, as of Autism Spectrum he’s started throwing a tantrum Disorders? whenever his routine has the is the smallest change. More and Each of the disorders on the National Dissemination Center more, his parents feel stressed, autism spectrum is a neurologi- for Children with Disabilities. not knowing what might trigger cal disorder that affects a child’s Ryan’s next upset. ability to communicate, under- NICHCY stand language, play, and relate Often, it seems Ryan doesn’t 1825 Connecticut Avenue N.W. to others. They share some or notice or care if his family or Washington, DC 20009 all of the following characteris- anyone else is around. His 1.800.695.0285 (Voice / TTY) tics, which can vary from mild parents just don’t know how to 202.884.8200 (Voice / TTY) to severe: reach their little boy, who seems [email protected] so rigid and far too set in his http://nichcy.org • Communication problems ways for his tender young age. (for example, with the use

Disability Fact Sheet #1 (FS1) or comprehension of Pervasive Developmental Disorders (PDD) language);

• Difficulty relating to people, Autistic Asperger Rett Childhood Disintegrative PDDNOS things, and events; Disorder Syndrome Syndrome Disorder • Playing with toys and objects in unusual ways; Current Classification Scheme in the DSM-IV-TR • Difficulty adjusting to changes in routine or to familiar surroundings; and What are the Specific The five conditions are Disorders on the defined in the Diagnostic and Statistical Manual, Fourth Edition, • Repetititive body move- Autism Spectrum? ments or behaviors.1 Text Revision (DSM-IV-TR) of the American Psychiatric Society These characteristics are There are five disorders (2000). This is also the manual typically evident before the age classified under the umbrella used to diagnose autism and its of three. category officially known as associated disorders, as well as a Pervasive Developmental wide variety of other disabili- Children with autism or one Disorders, or PDD. As shown ties. of the other disorders on the above, these are: autism spectrum can differ At the moment, according considerably with respect to • autism; to the 2000 edition of the DSM- their abilities, intelligence, and IV, a diagnosis of autistic disor- • Asperger syndrome; behavior. Some children don’t der (or “classic” autism) is talk at all. Others use language • Rett syndrome; made when a child displays 6 or where phrases or conversations more of 12 symptoms across are repeated. Children with the • childhood disintegrative three major areas: most advanced language skills disorder; and tend to talk about a limited • social interaction (such as range of topics and to have a • Pervasive Developmental the inability to establish or hard time understanding Disorder Not Otherwise maintain relationships with abstract concepts. Repetitive Specified (often referred to peers appropriate to the play and limited social skills are as PDDNOS).2 level of the child’s develop- also evident. Other common ment, symptoms of a disorder on the Although there are subtle autism spectrum can include differences and degrees of • communication (such as the unusual and sometimes uncon- severity between these five absence of language or trolled reactions to sensory conditions, the treatment and delays in its development), information—for instance, to educational needs of a child and loud noises, bright lights, and with any of these disorders will • behavior (such as repetitive certain textures of food or be very similar. For that reason, preoccupation with one or fabrics. the term “autism spectrum disorders”—or ASDs, as they are more areas of interest in a sometimes called— is used way that is abnormal in its quite often now and is actually intensity or focus). expected to become the official When children display term to be used in the future similar behaviors but do not (see the box on the next page).3 meet the specific criteria for autistic disorder, they may be

NICHCY: 1.800.695.0285 2 Autism Spectrum Disorders (FS1) diagnosed as having one of the ances within the brain. These determine if they do have a other disorders on the spec- disorders are not due, however, disability and, because of the trum—Aspergers, Rett’s, child- to psychological factors or, as disability, need special services hood disintegrative disorder, or has been widely reported in the under IDEA. Those special PDDNOS. PDDNOS (Pervasive press, to childhood vaccines.6 services are: Developmental Disorder Not Otherwise Specified) is the least Is There • Early intervention | A specific diagnosis and typically Help Available? system of services to support means that a child has dis- infants and toddlers with played the least specific of Yes, there’s a lot of help disabilities (before their 3rd autistic-like symptoms or available, beginning with the birthday) and their families. behaviors and has not met the free evaluation of the • Special education criteria for any of the other child. The nation’s special and related services | disorders. education law, the Services available Individuals with Dis- through the public Terminology used with abilities Education Act school system for autism spectrum disorders can (IDEA), requires that school-aged be a bit confusing, especially all children suspected children, including the use of PDD and PDDNOS of having a disability preschoolers (ages to refer to two different things be evaluated without 3-21). that are similar and intertwined. cost to their parents to Still, it’s important to remember that, regardless of the specific diagnosis, treatments will be similar. How Common A Look at ASD Diagnoses in the Future are ASDs? In early 2010, the American Psychiatric Association released draft revisions to its Diagnostic and Statistical Manual of Mental Disor- According to the National ders (DSM-5) and invited comments from both professionals Institute of Mental Health and the general public. The final and official fifth revision of the (NIMH) and the Centers for DSM is expected to be published in May 2013.7 Disease Control and Prevention (CDC), some form of autism When published, the DSM-5 is expected to affect how autism affects 2 - 6 of every 1,000 and associated disorders are diagnosed. Among the proposed children, with the most recent revisions are: statistic being 1 in 110.4 ASDs are four times more common in • changing the name of the diagnostic category to Autism boys than in girls, although Rett Spectrum Disorders; Syndrome has only been diagnosed in girls.5 • including Asperger Syndrome, Childhood Disintegrative Disorder, and PDDNOS under the diagnosis of Autism What Causes an ASD? Spectrum Disorders, rather than defining them separately and a bit differently, as is now the case; The causes of autism and the other disorders on the • removing Rett Syndrome from the DSM entirely (and, thus, spectrum are not known. from the autism spectrum).8 Researchers are currently study- ing such areas as neurological All this is to say...stay tuned. The criteria for diagnoses of ASDs damage and chemical imbal- are in the process of changing.

NICHCY: 1.800.695.0285 3 Autism Spectrum Disorders (FS1) In addition to academic Definition of “Autism” under IDEA instruction, special education programs for students with ASDs focus on improving Under IDEA, autism is defined as: communication, social, aca- .....a developmental disability significantly affecting verbal demic, behavioral, and daily and nonverbal communication and social interaction, living skills. Behavior and generally evident before age three, that adversely affects a communication problems that child’s educational performance. interfere with learning often require the assistance of a Other characteristics often associated with autism are professional who is particularly engaging in repetitive activities and stereotyped movements, knowledgeable in the autism resistance to environmental change or change in daily field to develop and help routines, and unusual responses to sensory experiences. The implement a plan which can be term autism does not apply if the child’s educational carried out at home and school. performance is adversely affected primarily because the child has an emotional disturbance, as defined in IDEA. The classroom environment should be structured so that the A child who shows the characteristics of autism after age 3 program is consistent and could be diagnosed as having autism if the criteria above are predictable. Students with an satisfied. [34 CFR §300.8(c)(1)] ASD learn better and are less confused when information is presented visually as well as Under IDEA, children with section, State Agencies. The verbally. Interaction with a disorder on the autism agency listed there will be able nondisabled peers is also spectrum are usually found to put you in contact with the important, for these students eligible for services under the early intervention program in provide models of appropriate category of “autism.” In the fall your community. language, social, and behavioral of 2005, more than 160,000 skills. Consistency and continu- school-aged children (3-21) To have a school-aged child ity are very important for received special education and evaluated for an ASD or to children with an ASD, and related services in the public access special education services parents should always be schools under the “autism” for a school-aged child, we involved in the development of category.9 IDEA specifically recommend getting in touch their child’s program, so that defines “autism” as shown in with your local public school learning activities, experiences, the box above. system. Calling the elementary and approaches will be most school in your neighborhood is effective and can be carried over To have a child evaluated to an excellent place to start. into the home and community. see if he or she has a disability, including one on the autism What about School? With educational programs spectrum, or to access early designed to meet a student’s intervention services for a child Early diagnosis and individual needs and special- up to his or her 3rd birthday, we intervention are very important ized adult support services in recommend consulting for children with an ASD. As employment and living arrange- NICHCY’s State Resource Sheet we’ve mentioned, under IDEA ments, many children and for your state (available online children with an ASD may be adults with a disability on the at: http://www.nichcy.org/ eligible for early intervention autism spectrum grow to live, families-community/states/). services (birth to 3) and an work, and participate fully in You’ll find a listing for early educational program appropri- their communities. intervention under the first ate to their individual needs.

NICHCY: 1.800.695.0285 4 Autism Spectrum Disorders (FS1) References Tips for Parents 1 Autism Society of America. (2008). About • Learn about autism spectrum disor- autism. Available online at: www.autism- ders—especially the specific disorder society.org of your child. The more you know, the more you can help yourself and 2 American Psychiatric Association. your child. Your state’s Parent (2000). Diagnostic and statistical manual of Training and Information Center mental disorders fourth edition, text revision (PTI) can be very helpful. You’ll find (DSM-IV-TR). Arlington, VA: Author. your PTI listed on NICHCY’s online 3 American Psychiatric Association. (2010). State-Specific Information (under DSM-5 proposed revisions include new “Organizations Especially for Parents”). We’ve also category of autism spectrum disorders (press listed organizations on page 6 that can help you release). Available online at: become knowledgeable about your child’s disorder. www.dsm5.org/Newsroom/Documents/ Autism%20Release%20FINAL%202.05.pdf • Be mindful to interact with and teach your child in ways that are most likely to get a positive response. 4 Centers for Disease Control and Learn what is likely to trigger a melt-down for your Prevention (CDC). (2009). Autism child, so you can try to minimize them. Remember, the spectrum disorders: Data and statistics. earliest years are the toughest, but it does get better! Available online at: www.cdc.gov/ ncbddd/autism/data.html

• Learn from professionals and other parents how to 5 Centers for Disease Control and meet your child’s special needs, but remember your son Prevention (CDC). (2009). Autism or daughter is first and foremost a child; life does not spectrum disorders: Research. Available need to become a neverending round of therapies. online at: www.cdc.gov/ncbddd/autism/ research.html • If you weren’t born loving highly structured, consistent schedules and routines, ask for help from other parents 6 Centers for Disease Control and and professionals on how to make it second nature for Prevention (CDC). (2009). Concerns about you. Behavior, communication, and social skills can all autism: CDC statement on autism and be areas of concern for a child with autism and experi- thimerosal. Available online at: ence tells us that maintaining a solid, loving, and www.cdc.gov/vaccinesafety/Concerns/ Autism/Index.html structured approach in caring for your child, can help greatly. 7 American Psychiatric Association. (2009). DSM-5 publication date moved to • Learn about assistive technology (AT) that can help May 2013 (press release). Available at: your child. This may include a simple picture commu- www.dsm5.org/Newsroom/Documents/ nication board to help your child express needs and 09-65%20DSM%20Timeline.pdf desires, or may be as sophisticated as an augmentative communication device. 8 American Psychiatric Association. (2010). Proposed revision: Autistic disorder. Available • Work with professionals in early intervention or in your online at: www.dsm5.org/ child’s school to develop an IFSP or an IEP that reflects ProposedRevisions/Pages/ your child’s needs and abilities. Be sure to include proposedrevision.aspx?rid=94# related services, supplementary aids and services, AT, 9 U.S. Department of Education. (2007). and a positive behavioral support plan, if needed. 27th annual report to Congress on the implementation of the Individuals with • Be patient and stay optimistic. Your child, like every Disabilities Education Act, 2005 (Vol. 2). child, has a whole lifetime to learn and grow. Washington, DC: Author.

NICHCY: 1.800.695.0285 5 Autism Spectrum Disorders (FS1) Organizations: Your Gateway to Tips for Teachers Information, Connection, and Research

• Learn more about the autism For incredible amounts of information on spectrum. Check out the research ASDs, visit the organizations listed below. on effective instructional interventions and behavior on NICHCY’s Autism Society of America website. The organizations listed in 1.800.3AUTISM (1.800.328.8476) this publication can also help. http://www.autism-society.org/site/ PageServer?pagename=about_home • Make sure directions are given step-by- step, verbally, visually, and First Signs by providing physical supports or http://www.firstsigns.org prompts, as needed by the student. Students with autism spectrum disorders often have trouble Autism Speaks interpreting facial expressions, body language, 888-AUTISM2 (288-4762) and tone of voice. Be as concrete and explicit as http://www.autismspeaks.org/ possible in your instructions and feedback to the student. OASIS @ MAPP Online Asperger Syndrome Information • Find out what the student’s strengths and inter- and Support (OASIS) and MAAP Services ests are and emphasize them. Tap into those for Autism and Asperger Syndrome. avenues and create opportunities for success. http://www.aspergersyndrome.org Give positive feedback and lots of opportunities for practice. Exploring Autism Information in English and Spanish. • Build opportunities for the student to have social http://www.exploringautism.org/ and collaborative interactions throughout the regular school day. Provide support, structure, Autism Collaboration and lots of feedback. http://www.autism.org/

• If behavior is a significant issue for the student, Interactive Autism Network seek help from expert professionals (including http://www.ianproject.org/ parents) to understand the meanings of the behaviors and to develop a unified, positive OAR | Organization for Autism Research approach to resolving them. http://www.researchautism.org/

• Have consistent routines and schedules. When CDC | Centers for Disease Control and you know a change in routine will occur (e.g., a Prevention field trip or assembly) prepare the student by Information in English and Spanish. telling him or her what is going to be different www.cdc.gov/ncbddd/autism/index.html and what to expect or do. National Autism Center • Work together with the student’s parents and 1.877.313.3833 other school personnel to create and implement http://www.nationalautismcenter.org/ an educational plan tailored to meet the index.php student’s needs. Regularly share information about how the student is doing at school and at home.

NICHCY: 1.800.695.0285 6 Autism Spectrum Disorders (FS1) NICHCY Disability Fact Sheet—No.13 “Legally blind”indicatesthata • “Lowvision”generallyreferstoa • “Partiallysighted”indicatessome • as follows: impairments. Thesetermsaredefined describe studentswithvisual are usedintheeducationalcontextto vision, legallyblind,andtotallyblind widest point);and field ofvision(20degreesatits in thebettereyeoraverylimited person haslessthan20/200vision braille; size ofprint,and,sometimes, require adaptationsinlighting,the senses tolearn,althoughtheymay combination ofvisionandother contact lenses.Theyusea with theaidofeyeglassesor normal viewingdistance,even unable toreadthenewspaperata individuals withsightwhoare vision. Lowvisionappliestoall necessarily limitedtodistance severe visualimpairment,not education; resulted inaneedforspecial type ofvisualproblemhas The termspartiallysighted,low ✧ V V V V V V V V V V

D D D D D isual I isual I isual I ef ef ef ef ef isual I isual I isual I isual I isual I isual I isual I init init init init init ion ion ion ion ion

✧ mpa mpa mpa mpa mpa mpa mpa mpa mpa mpa congenital disorders,andinfection. disorders, diabeticretinopathy, result invisualdisturbances,corneal glaucoma, muscularproblemsthat degeneration, albinism,cataracts, visual impairmentscanincluderetinal itself. Eyedisorderswhichcanleadto vision, ratherthantheeyedisorder consequence ofafunctionalloss Totallyblindstudents,wholearn • Visual impairmentisthe media. via brailleorothernon-visual Disabi Disabi Disabi irmen irmen Disabi Disabi irmen irmen irmen irmen irmen irmen irmen irmen National DisseminationCenter 1.800.695.0285 (Voice /TTY) for Children withDisabilities. 202.884.8200 (Voice /TTY) Washington, DC20013

lit lit lit lit lit [email protected] www.nichcy.org P.O. Box1492 y F y F y F y F y F NICHCY act S act S act S act S act S J J J J J ts ts ts isthe ts ts ts ts ts ts ts anuary 2004 anuary 2004 anuary 2004 anuary 2004 anuary 2004 heet, N heet, N heet, N heet, N heet, N o. 13 o. 13 o. 13 o. 13 o. 13 ✧ Incidence ✧

The rate at which visual impairments occur in individuals under the age of 18 is 12.2 per 1,000. Severe visual impairments (legally or totally blind) occur at a rate of .06 per 1,000.

✧ Characteristics ✧

The effect of visual problems on a child’s development depends on the severity, type of loss, age at which the condition appears, and overall functioning level of the child. Many children who have multiple disabilities may also have visual impairments resulting in motor, cognitive, and/or social developmental delays.

A young child with visual impairments has little reason to explore interesting objects in the environment and, thus, may miss opportunities to have experiences and to learn. This lack of exploration may continue until learning becomes motivating or until intervention begins.

Because the child cannot see parents or peers, he or she may be unable to imitate social behavior or understand nonverbal cues. Visual disabilities can create obstacles to a growing child’s independence. Don’t Be Shy!

All of our publications and ✧ Educational Implications ✧ resource lists are online— help yourself! Visit us at: Children with visual impairments should www.nichcy.org be assessed early to benefit from early If you’d like personalized intervention programs, when applicable. assistance, email or call Technology in the form of computers us: and low-vision optical and video aids [email protected] enable many partially sighted, low 1.800.695.0285 vision, and blind children to participate (V/TTY) in regular class activities. Large print materials, books on tape, and braille books are available.

NICHCY: 1.800.695.0285 2 Fact Sheet on Visual Impairments (FS13) Students with visual impairments may need additional Other Helpful help with special equipment and modifications in the Things to Know regular curriculum to emphasize listening skills, communication, orientation and mobility, vocation/career options, These NICHCY and daily living skills. Students with low vision or those publications talk about topics important to who are legally blind may need help in using their residual parents of a child with a vision more efficiently and in working with special aids disability.

and materials. Students who have visual impairments Parenting a Child combined with other types of disabilities have a greater with Special Needs need for an interdisciplinary approach and may require Your Child’s greater emphasis on self care and daily living skills. Evaluation ✧ ✧ Parent to Parent Support Resources Questions Often Asked American Foundation for the Blind. Search AFB’s Service by Parents About Special Center on the Internet to identify services for blind and Education Services visually impaired persons in the United States and Canada. Available: www.afb.org/services.asp Developing Your Child’s IEP Holbrook, M.C. (Ed.). (1996). Children with visual impairments: A parents' guide. Bethesda, MD: Woodbine. All are available in (Phone: 800.843.7323. Web: www.woodbinehouse.com) English and in Spanish— on our Web site or by Lewis, S., & Allman, C.B. (2000). Seeing eye to eye: An contacting us. administrator's guide to students with low vision. New York: American Foundation for the Blind. (Phone: 800.232.3044. Web: www.afb.org) National Eye Institute. (2003, December). Eye health organizations list. (Available online at: www.nei.nih.gov/health/organizations.htm) The terms partially sighted, low vision, legally blind, and totally blind are used in the educational context to describe students with visual impairments.

NICHCY: 1.800.695.0285 3 Fact Sheet on Visual Impairments (FS13) ✧ Organizations ✧ National Braille Association, Inc. (NBA) Prevent Blindness America 3 Townline Circle 500 E. Remington Road Rochester, NY 14623-2513 Schaumburg, IL 60173 American Council of the Blind 585.427.8260 847.843.2020; 800.331.2020 1155 15th St. N.W., Suite 1004 [email protected] [email protected] Washington, D.C. 20005 www.nationalbraille.org/ www.preventblindness.org 202.467.5081; 800.424.8666 [email protected] National Braille Press The Foundation Fighting Blindness www.acb.org 88 St. Stephen Street (formerly the National Retinitis Boston, MA 02115 Pigmentosa Foundation) American Foundation for the Blind 617.266.6160; 888.965.8965 11435 Cronhill Drive 11 Penn Plaza, Suite 300 [email protected] Owings Mills, MD 21117-2220 New York, NY 10001 www.nbp.org 410.568.0150; 410.363.7139 (TTY) 800.232.5463 (Hotline) 888.394.3937; 800.683.5551 (TTY) For publications call: 800.232.3044 National Eye Institute [email protected] [email protected] 31 Center Drive www.blindness.org www.afb.org MSC 2510 Bethesda, MD 20892-2510 Blind Children’s Center 301.496.5248 4120 Marathon Street [email protected] Los Angeles, CA 90029-0159 www.nei.nih.gov 323.664.2153; 800.222.3566 [email protected] National Federation of the Blind, www.blindchildrenscenter.org Parents Division 1800 Johnson Street National Association for Parents of Baltimore, MD 21230 the Visually Impaired, Inc. 410.659.9314, ext. 360 P.O. Box 317 [email protected] Watertown, MA 02472-0317 www.nfb.org/nopbc.htm 617.972.7441; 800.562.6265 [email protected] National Library Service for the Blind www.napvi.org and Physically Handicapped, Library of Congress National Association for Visually 1291 Taylor Street, N.W. Handicapped Washington, D.C. 20011 22 West 21st Street, 6th Floor 202.707.5100; 202.707.0744 (TTY); New York, NY 10010 800.424.8567 212.889.3141 [email protected] [email protected] www.loc.gov/nls www.navh.org

FS13, January 2004

Publication of this document is made possible through Cooperative Agreement #H326N030003 between the Academy for Educational Development and the Office of Special Education Programs of the U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government.

This publication is copyright free. Readers are encouraged to copy and share it, but please credit NICHCY.

4 Cerebral Palsy

NICHCY Disability Fact Sheet #2 June 2010

Jennifer’s Story

Jen was born 11 weeks Jen’s mom told him. He ability to use our muscles early and weighed only 2½ suggested that Jen’s mom and bodies. Cerebral means pounds. The doctors were take the little girl to a doctor having to do with the brain. surprised to see what a who could look closely at Palsy means weakness or strong, wiggly girl she was. Jen’s development. Jen’s problems with using the But when Jen was just a few mom took her to a develop- muscles. Often the injury days old, she stopped breath- mental specialist who finally happens before birth, some- ing and was put on a ventila- put a name to all the little times during delivery, or, like tor. After 24 hours she was things that hadn’t seemed Jen, soon after being born. able to breathe on her own right with Jen—cerebral again. The doctors did a lot palsy. CP can be mild, moder- of tests to find out what had ate, or severe. Mild CP may happened, but they couldn’t What is CP? mean a child is clumsy. find anything wrong. The rest Moderate CP may mean the of Jen’s time in the hospital Cerebral palsy—also child walks with a limp. He was quiet, and after two known as CP—is a condition or she may need a special leg months she was able to go caused by injury to the parts brace or a cane. More severe home. Everyone thought she of the brain that control our CP can affect all parts of a would be just fine. child’s physical abilities. A child with moderate or severe At home, Jen’s mom CP may have to use a wheel- noticed that Jen was really chair and other special sloppy when she drank equipment. from her bottle. As the months went by, Jen’s is the Sometimes children with mom noticed other things National Dissemination Center CP can also have learning she didn’t remember for Children with Disabilities. problems, problems with seeing with Jen’s older hearing or seeing (called brother. At six months, Jen NICHCY sensory problems), or intellec- didn’t hold her head up 1825 Connecticut Avenue N.W. tual disabilities. Usually, the straight. She cried a lot and Washington, DC 20009 greater the injury to the would go stiff with rage. 1.800.695.0285 (Voice / TTY) brain, the more severe the CP. When Jen went back for 202.884.8200 (Voice / TTY) However, CP doesn’t get her six-month checkup, [email protected] worse over time, and most the doctor was concerned http://nichcy.org children with CP have a by what he saw and what normal life span.

Disability Fact Sheet #2 (FS2) How Common is CP? loose, creating a mix of determine if they do have a stiffness and involuntary disability and, because of the Cerebral palsy occurs in movements.2 disability, need special approximately 2 per 1000 live services under IDEA. Those births. This frequency rate More words used to special services are: hasn’t changed in more than describe the different types of four decades, even with the CP include: • Early intervention | A significant advances in the system of services to • Diplegia—This means medical care of newborns.1 support infants and only the legs are affected. toddlers with disabilities What Are the (before their 3rd birth- • Hemiplegia—This means day) and their families. Signs of CP? one half of the body (such as the right arm and leg) is • Special education and There are four main types affected. related services | Services of CP: available through the • Quadriplegia—This public school system for • Spastic CP is where means both arms and legs school-aged there is too much muscle are affected, sometimes children, including tone or tightness. Movements including the facial muscles preschoolers (ages 3-21). are stiff, especially in the legs, and torso. arms, and/or back. Children Under IDEA, children with this form of CP move Is There with CP are usually found their legs awkwardly, turning Help Available? eligible for services under the in or scissoring their legs as category of “Orthopedic they try to walk. This form of Yes, there’s a lot of help Impairment.” We’ve included CP occurs in 50-75% of all available, beginning with the IDEA’s definition of orthope- cases. free evaluation of the child. dic impairment in the box The nation’s special educa- below. • Athetoid CP (also called tion law, the Individuals with dyskinetic CP) can affect Disabilities Education Act To access early interven- movements of the entire (IDEA), requires that all tion services for a child up to body. Typically, this form of children suspected of having his or her 3rd birthday, CP involves slow, uncon- a disability be evaluated consult NICHCY’s State trolled body movements and without cost to their parents to Resource Sheet for your state low muscle tone that makes it hard for the person to sit straight and walk. This form occurs in 10-20% of all cases. Definition of “Orthopedic Impairment” under IDEA

• Ataxic CP involves poor Under IDEA, cerebral palsy is considered an “orthopedic coordination, balance, and impairment,” which is defined as: depth perception and occurs ...a severe orthopedic impairment that adversely affects in approximately 5-10% of all a child’s educational performance. The term includes cases. impairments caused by a congenital anomaly, impair- • Mixed CP is a combina- ments caused by disease (e.g., poliomyelitis, bone tion of the symptoms listed tuberculosis), and impairments from other causes above. A child with mixed CP (e.g.,cerebral palsy, amputations, and fractures or has both high and low tone burns that cause contractures). muscle. Some muscles are [34 CFR §300.8(c)(9)] too tight, and others are too

NICHCY: 1.800.695.0285 2 Cerebral Palsy (FS2) (available online at: http:// such as dressing, feeding, the effects of CP, but there is www.nichcy.org/families- writing, and other daily living no cure for the condition. It’s community/states/). You’ll tasks. also important to understand find a listing for early inter- that cerebral palsy is not vention under the first • Speech-language pathol- contagious, not inherited, section, State Agencies. The ogy (S/L), which helps the and not progressive.3 The agency listed there will be child develop his or her symptoms will differ from able to put you in contact communication skills. The person to person and change with the early intervention child may work in particular as children and their nervous program in your community. on speaking, which may be systems mature.4 difficult due to problems To access special educa- with muscle tone of the What About tion services for a school- tongue and throat. School? aged child, get in touch with All of these are available your local public school A child with CP can face as related services in both system. Calling the elemen- many challenges in school early intervention programs tary school in your neighbor- and is likely to need indi- (for very young children) and hood is an excellent place to vidualized help. Fortunately, special education (for start. states are responsible for school-aged children). What About meeting the educational Children with needs of children with Treatment? CP may also find disabilities. a variety of With early and ongoing As we’ve said, for special equip- treatment the effects of CP children up to the ment helpful. can be reduced. Many chil- 3rd birthday, For example, dren learn how to get their services are braces (also bodies to work for them in provided through an called AFOs) other ways. For example, one early intervention system. may be used to hold infant whose CP keeps him Staff work with the child’s the foot in place when the from crawling may be able to family to develop what is child stands or walks. get around by rolling from known as an Custom splints can provide place to place. Individualized Family support to help a child use Services Plan, or IFSP. The his or her hands. A variety of Typically, children with IFSP will describe the child’s therapy equipment and CP may need different kinds unique needs as well as the adapted toys are available to of therapy, including: services the child will receive help children play and have to address those needs. The fun while they are working • Physical therapy (PT), IFSP will also emphasize the their bodies. Activities such which helps the child de- unique needs of the family, as swimming or horseback velop stronger muscles such so that parents and other riding can help strengthen as those in the legs and family members will know weaker muscles and relax the trunk. Through PT, the child how to help their young child tighter ones. works on skills such as with CP. Early intervention walking, sitting, and keeping services may be provided on his or her balance. New medical treatments are being developed all the a sliding-fee basis, meaning that the costs to the family • Occupational therapy time. Sometimes surgery, will depend upon their (OT), which helps the child Botox injections, or other income. develop fine motor skills medications can help lessen

NICHCY: 1.800.695.0285 3 Cerebral Palsy (FS2) For school-aged children, by simple switch pads or difficult for parents to imag- including preschoolers, keyboard adaptations. ine what their child's future special education and will be like. Good therapy related services will be The ability of the brain and handling can help, but provided through the to find new ways of the most important "treat- school system. School working after an ment" the child can receive is staff will work with the injury is remarkable. love and encouragement, child’s parents to de- Even so, it can be with lots of typical childhood velop an Individualized Education Program, or IEP. The IEP is similar to an IFSP in that it de- Tips for Parents scribes the child’s unique needs and the services that • Learn about CP. The more you know, the more you can have been designed to meet help yourself and your child. See the list of resources those needs. Special educa- and organizations at the end of this publication. tion and related services, which can include PT, OT, • Love and play with your child. Treat your son or and speech-language pathol- daughter as you would a child without disabilities. ogy, are provided at no cost Take your child places, read together, have fun. to parents. • Learn from professionals and other parents how to meet In addition to therapy your child’s special needs, but try not to turn your lives services and special equip- into one round of therapy after another. ment, children with CP may • Ask for help from family and friends. Caring for a child need what is known as with CP is hard work. Teach others what to do and give assistive technology. Examples them plenty of opportunities to practice while you take a of assistive technology break. include: • Keep informed about new treatments and technologies • Communication devices, that may help. New approaches are constantly being which can range from the worked on and can make a huge difference to the quality simple to the sophisticated. of your child’s life. However, be careful about unproven Communication boards, for new “fads.” example, have pictures, symbols, letters, or words • Learn about assistive technology that can help your attached. The child commu- child. This may include a simple communication board nicates by pointing to or to help your child express needs and desires, or may be gazing at the pictures or as sophisticated as a computer with special software. symbols. Augmentative communication devices are • Be patient, keep up your hope for improvement. Your more sophisticated and child, like every child, has a whole lifetime to learn and include voice synthesizers grow. that enable the child to “talk” with others. • Work with professionals in early intervention or in your school to develop an IFSP or an IEP that reflects your • Computer technology, child’s needs and abilities. Be sure to include related which can range from elec- services such as speech-language pathology, physical tronic toys with special therapy, and occupational therapy if your child needs switches to sophisticated these. Don’t forget about assistive technology either! computer programs operated

NICHCY: 1.800.695.0285 4 Cerebral Palsy (FS2) experiences, family, and References friends. With the right mix of support, equipment, extra 1 eMedicine. (2009, March). time, and accommodations, Cerebral palsy. Available all children with CP can be online at: http:// successful learners and full emedicine.medscape.com/ participants in life. article/310740-overview

2 United Cerebral Palsy. Tips for Teachers (2001). General information: Cerebral palsy facts and figures. • Learn more about CP. The resources and organizations at Available online at: the end of this publication will help you. www.ucp.org/ ucp_channeldoc.cfm/1/11/ • This may seem obvious, but sometimes the “look” of CP 10427/10427-10427/447 can given the mistaken impression that a child who has CP cannot learn as much as others. Focus on the 3 Healthcommunities.com. individual child and learn firsthand what needs and (2007, December). Cerebral capabilities he or she has. palsy. Available online at: www.neurologychannel.com/ • Tap into the strategies that teachers of students with cerebralpalsy/index.shtml learning disabilities use for their students. Become knowledgeable about different learning styles. Then you 4 Ibid. can use the approach best suited for a particular child, based upon that child’s learning abilities as well as physical abilities. Resources and Organizations • Be inventive. Ask yourself (and others), “How can I adapt are listed on the next page. this lesson for this child to maximize active, hands-on learning?”

• Learn to love assistive technology. Find experts within and outside your school to help you. Assistive technology can mean the difference between independence for your student or not.

• Always remember, parents are experts, too. Talk candidly with your student’s parents. They can tell you a great deal about their daughter’s or son’s special needs and abilities.

• Effective teamwork for the child with CP needs to bring together professionals with diverse backgrounds and expertise. The team must combine the knowledge of its members to plan, implement, and coordinate the child’s services.

NICHCY: 1.800.695.0285 5 Cerebral Palsy (FS2) Organizations and Resources

United Cerebral Palsy NINDS | National Institute on Neurological 1.800.872.5827 Disorders and Stroke http://www.ucp.org 1.800.352.9424 Information in English and Spanish. Find an incredible wealth of information and http://www.ninds.nih.gov/disorders/ connections at UCP, including the chapters cerebral_palsy/detail_cerebral_palsy.htm working in your state and publications and resource pages for parents and professionals in English and in Spanish. 4MyChild 1.800.469.2445 http://www.cerebralpalsy.org/ Medline This service of the National Institutes of Health is an excellent place to learn about CP and keep Woodbine House on top of the latest medical treatments and 1.800.843.7323 therapies. Two web pages in particular to visit Visit this commercial publisher to connect with are: a book series on CP, including a guide for parents; a children’s book; and a guide to • Medline’s CP fact sheet teaching motor skills to children with CP. www.nlm.nih.gov/medlineplus/ Read more about these resources at: cerebralpalsy.html http://www.woodbinehouse.com/ Cerebral-Palsy.12.0.0.2.htm • Medline’s interactive tutorial on CP www.nlm.nih.gov/medlineplus/tutorials/ cerebralpalsy/htm/index.htm Cerebral Palsy Guide This guide offers extensive information on CP from a medical perspective. http://gait.aidi.udel.edu/gaitlab/cpGuide.html The CDC | Centers for Disease Control and Prevention 1.800.CDC.INFO Information in English and Spanish. http://www.cdc.gov/ncbddd/cp/index.html

FS2—June 2010

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

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

NICHCY: 1.800.695.0285 6 Cerebral Palsy (FS2) Emotional Disturbance

NICHCY Disability Fact Sheet #5 June 2010

You may be reading this fact the term used in the nation’s sheet with one of these specific special education law, the disorders in mind, or you may Individuals with Disabilities be looking for information Education Act (IDEA). IDEA about emotional disturbances defines emotional disturbance as The mental health of our in general. In either case, keep follows: children is a natural and impor- reading to find out what differ- “...a condition exhibiting tant concern for us all. The fact ent emotional distubances have one or more of the follow- is, many mental disorders have in common, how they are ing characteristics over a their beginnings in childhood defined in federal law, and long period of time and to or adolescence, yet may go where to find more detailed a marked degree that undiagnosed and untreated for information on specific disor- adversely affects a child’s years.1 ders. educational performance: We refer to mental Definition (A) An inability to learn disorders using different “um- that cannot be explained brella” terms such as emotional We’ve chosen to use the by intellectual, sensory, or disturbance, behavioral disor- term “emotional disturbance” health factors. ders, or mental illness. Beneath in this fact sheet because that is these umbrella terms, there is (B) An inability to build actually a wide range of specific or maintain satisfactory conditions that differ from one interpersonal relation- another in their characteristics ships with peers and and treatment. These include teachers. (but are not limited to): is the (C) Inappropriate types • anxiety disorders; National Dissemination Center of behavior or feelings under normal circum- • bipolar disorder (sometimes for Children with Disabilities. stances. called manic-depression); NICHCY (D) A general pervasive • conduct disorders; 1825 Connecticut Avenue N.W. mood of unhappiness or Washington, DC 20009 • eating disorders; depression. 1.800.695.0285 (Voice / TTY) • obsessive-compulsive 202.884.8200 (Voice / TTY) (E) A tendency to disorder (OCD); and [email protected] develop physical symp- http://nichcy.org toms or fears associated • psychotic disorders. with personal or school problems.”2

Disability Fact Sheet #5 (FS5) As defined by IDEA, emo- According to NAMI, mental tional disturbance includes illnesses can affect persons of schizophrenia but does not any age, race, religion, or apply to children who are income. Further: socially maladjusted, unless it is determined that they have an Mental illnesses are not emotional disturbance.3 the result of personal weakness, lack of Characteristics character, or poor upbringing. Mental As is evident in IDEA’s • Immaturity (inappropriate illnesses are treatable. definition, emotional distur- crying, temper tantrums, Most people diagnosed bances can affect an individual poor coping skills); and with a serious mental in areas beyond the emotional. illness can experience Depending on the specific • Learning difficulties (aca- relief from their symp- mental disorder involved, a demically performing below toms by actively partici- person’s physical, social, or grade level). pating in an individual cognitive skills may also be treatment plan.5 affected. The National Alliance Children with the most on Mental Illness (NAMI) puts serious emotional disturbances Frequency this very well: may exhibit distorted thinking, excessive anxiety, bizarre motor According to the CDC Mental illnesses are acts, and abnormal mood (Centers for Disease Control medical conditions that swings. and Prevention), approximately disrupt a person's 8.3 million children (14.5%) thinking, feeling, mood, Many children who do not aged 4–17 years have parents ability to relate to others have emotional disturbance who’ve talked with a health care and daily functioning. may display some of these same provider or school staff about Just as diabetes is a behaviors at various times the child’s emotional or behav- disorder of the pancreas, during their development. ioral difficulties.6 Nearly 2.9 mental illnesses are However, when children have million children have been medical conditions that an emotional disturbance, these prescribed medication for these often result in a dimin- behaviors continue over long difficulties.7 ished capacity for periods of time. Their behavior coping with the ordi- signals that they are not coping Help for nary demands of life.4 with their environment or School-Aged Children peers. Some of the characteristics Causes IDEA requires that special and behaviors seen in children Causes education and related services who have an emotional distur- No one knows the actual be made available free of charge bance include: cause or causes of emotional to every eligible child with a disability, including • Hyperactivity (short atten- disturbance, although several preschoolers (ages 3-21). These tion span, impulsiveness); factors—heredity, brain disorder, diet, stress, and family services are specially designed • Aggression or self-injurious functioning—have been sug- to address the child’s individual behavior (acting out, gested and vigorously re- needs associated with the fighting); searched. A great deal of re- disability—in this case, emo- search goes on every day, but to tional disturbance, as defined • Withdrawal (not interacting date, researchers have not found by IDEA (and further specified socially with others, exces- that any of these factors are the by states). In the 2003-2004 sive fear or anxiety); direct cause of behavioral or school year, more than 484,000 emotional problems. children and youth with emotional disturbance received

NICHCY: http://nichcy.org 2 Emotional Disturbance (FS5) these services to address their posttraumatic stress disorder individual needs related to (PTSD), social anxiety disorder emotional disturbance.8 (also called social phobia), and specific phobias.9 Determining a child’s eligibility for special education According to the Anxiety and related services begins with Disorders Association of a full and individual evaluation America, anxiety disorders are of the child. Under IDEA, this the most common psychiatric evaluation is provided free of illnesses affecting children and charge in public schools. adults.10 They are also highly treatable. Unfortunately, only There is a lot to know about about 1/3 of those affected the special education process, receive treatment.11 much of which you can learn at Conduct Disorder NICHCY. We invite you to read Bipolar Disorder the wide range of publications Conduct disorder refers to a we offer on the topic, especially Also known as manic- group of behavioral and emo- those listed in the box below. depressive illness, bipolar tional problems in youngsters. disorder is a serious medical Children and adolescents with A Look at Specific condition that causes dramatic this disorder have great diffi- Emotional Disturbances mood swings from overly culty following rules and “high” and/or irritable to sad behaving in a socially accept- As we mentioned, emo- and hopeless, and then back able way.14 This may include tional disturbance is a com- again, often with periods of some of the following behav- monly used umbrella term for a normal mood in between. iors: number of different mental Severe changes in energy and • aggression to people and disorders. Let’s take a brief look behavior go along with these animals; at some of the most common of changes in mood.12 these. • destruction of property; For most people with Anxiety Disorders bipolar disorder, these mood • deceitfulness, lying, or swings and related symptoms stealing; or We all experience anxiety can be stabilized over time from time to time, but for many using an approach that com- • truancy or other serious people, including children, bines medication and psychoso- violations of rules.15 anxiety can be excessive, persis- cial treatment.13 tent, seemingly uncontrollable, and overwhelming. An irrational fear of everyday situations Read More about the may be involved. This high level Special Education Process at NICHCY of anxiety is a definite warning sign that a person may have an • 10 Basic Steps in Special Education anxiety disorder. http://nichcy.org/schoolage/steps/

As with the term emotional • Questions Often Asked by Parents about Special Education Services disturbance, “anxiety disorder” http://nichcy.org/publications/lg1 is an umbrella term that actually refers to several distinct • Evaluating Children for Disability disabilities that share the core http://nichcy.org/schoolage/evaluation/ characteristic of irrational fear: generalized anxiety disorder • Developing Your Child’s IEP (GAD), obsessive-compulsive http://nichcy.org/publications/pa12 disorder (OCD), panic disorder,

NICHCY: http://nichcy.org 3 Emotional Disturbance (FS5) Although conduct disorder away. Performing these so- is one of the most difficult called “rituals,” however, behavior disorders to treat, provides only temporary relief, young people often benefit and not performing them from a range of services that markedly increases anxiety.21 include: A large body of scientific • training for parents on how evidence suggests that OCD to handle child or adoles- results from a chemical imbal- 22 cent behavior; usually do not purge afterward ance in the brain. Treatment by vomiting or using laxatives.19 for most people with OCD • family therapy; should include one or more of • training in problem solving According to the National the following: Eating Disorders Association: skills for children or adoles- • a therapist trained in cents; and The most effective and behavior therapy; • community-based services long-lasting treatment for an eating disorder is some • Cognitive Behavior Therapy that focus on the young (CBT) person within the context of form of psychotherapy or family and community counseling, coupled with • medication (usually an influences.16 careful attention to antidepressant).23 medical and nutritional Eating Disorders needs. Some medications Psychotic Disorders have been shown to be Eating disorders are charac- helpful. Ideally, whatever “Psychotic disorders” is terized by extremes in eating treatment is offered another umbrella term used to behavior—either too much or should be tailored to the refer to severe mental disorders too little—or feelings of extreme individual, and this will that cause abnormal thinking distress or concern about body vary according to both the and perceptions. Two of the weight or shape. Females are severity of the disorder main symptoms are delusions much more likely than males to and the patient’s indi- and hallucinations. Delusions develop an eating disorder.17 vidual problems, needs, are false beliefs, such as think- and strengths.20 ing that someone is plotting Anorexia nervosa and against you. Hallucinations are bulimia nervosa are the two Obsessive-Compulsive Disorder false perceptions, such as most common types of eating hearing, seeing, or feeling disorders. Anorexia nervosa is Often referred to as OCD, something that is not there. characterized by self-starvation obsessive-compulsive disorder Schizophrenia is one type of and dramatic loss of weight. is actually considered an anxiety psychotic disorder.24 There are Bulimia nervosa involves a cycle disorder (which was discussed others as well. of binge eating, then self- earlier in this fact sheet). OCD induced vomiting or purging. is characterized by recurrent, Treatment for psychotic Both of these disorders are unwanted thoughts (obses- disorders will differ from person potentially life-threatening.18 sions) and/or repetitive behav- to person, depending on the iors (compulsions). Repetitive specific disorder involved. Most Binge eating is also consid- behaviors (handwashing, are treated with a combination ered an eating disorder. It’s counting, checking, or cleaning) of medications and psycho- characterized by eating excessive are often performed with the therapy (a type of counseling).25 amounts of food, while feeling hope of preventing obsessive unable to control how much or thoughts or making them go what is eaten. Unlike with bulimia, people who binge eat

NICHCY: http://nichcy.org 4 Emotional Disturbance (FS5) More about More about For Science Teachers and Their Students in Grades 6-8: School School The Science of Mental Illness As mentioned, emotional This inquiry-based curriculum from the National Institutes of disturbance is one of the Health is designed to help students in grades 6-8 gain a better categories of disability specified understanding of the biological basis of mental illnesses and in IDEA. This means that a what mental illnesses are—and what they are not. child with an emotional disturbance may be eligible for http://science.education.nih.gov/supplements/nih5/mental/default.htm special education and related services in public school. These services can be of tremendous help to students who have an • Students eligible for special private sector. There is also a emotional disturbance. education services under the network of mental health category of emotional support operating in every state Typically, educational disturbance may have IEPs as well as locally. programs for children with an that include psychological emotional disturbance need to or counseling services. To locate systems of support include attention to providing These are important related in your community or state, emotional and behavioral services available under visit the organizations we’ve support as well as helping them IDEA and are to be pro- listed in the box on the next to master academics, develop vided by a qualified social page. They can connect you social skills, and increase self- worker, psychologist, with local resources, including awareness, self-control, and self- guidance counselor, or support groups that provide esteem. A large body of research other qualified personnel. connection and understanding, exists regarding methods of information, referral, and providing students with positive Other Considerations advocacy for those living with behavioral support (PBS) in the emotional disturbance. school environment, so that Children and adolescents problem behaviors are mini- with an emotional disturbance mized and positive, appropriate should receive services based on References behaviors are fostered. (See the their individual needs, and resource section at the end of everyone involved in their 1 National Institute of Mental this fact sheet for more informa- education or care needs to be Health (NIMH). (2010). Child tion on PBS.) It is also impor- well-informed about the care and adolescent mental health. tant to know that, within the that they are receiving. It’s Available online at: http:// school setting: important to coordinate services www.nimh.nih.gov/health/topics/ between home, school, and child-and-adolescent-mental- • For a child whose behavior community, keeping the com- health/index.shtml impedes learning (including munication channels open 2 Code of Federal Regulations, Title the learning of others), the between all parties involved. 34, §300.8(c)(4)(i) team developing the child’s Individualized Education The Importance of Support 3 Code of Federal Regulations, Title Program (IEP) needs to 34, §300.8(c)(4)(ii) consider, if appropriate, Families often need help in 4 National Alliance on Mental strategies to address that understanding their child’s disability and how to address Illness. (2010). What is mental behavior, including positive illness: Mental illness facts. behavioral interventions, the needs that arise from the disability. Help is available from Available online at: strategies, and supports. http://tinyurl.com/3ew3d psychiatrists, psychologists, and other mental health profession- 5 Ibid. als that work in the public or

NICHCY: http://nichcy.org 5 Emotional Disturbance (FS5) 6 Simpson, G.A., Cohen, R.A., Pastor, P.N., & Reuben, C.A. (2008, Septem- Finding Support Locally ber). Use of mental health services in the past 12 months by children aged Support groups can be extremely helpful to individuals and 4–17 years: United States, 2005–2006. families living with emotional disturbance. To find a state or local NCHS Data Brief, No. 8, 1-8. Available support group, visit: online at: http://www.cdc.gov/nchs/ data/databriefs/db08.pdf Mental Health America | 1.800.969.6642 http://www.mentalhealthamerica.net/farcry/go/searchMHA 7 Ibid. 8 U.S. Department of Education. NAMI | National Alliance on Mental Illness | 1.800.950.NAMI (2007). 27th annual report to Congress http://www.nami.org/template.cfm?section=Your_Local_Nami on the implementation of the Individuals National Mental Health Consumers’ Self-Help Clearinghouse with Disabilities Education Act, 2005 1.800.553.4539 | http://www.cdsdirectory.org/ (Vol. 2). Washington, DC: Author. 9 NIMH. (2010, March). Anxiety There are also support groups available from organizations that disorders. Available online at: address specific mental disorders under the umbrella term of www.nimh.nih.gov/health/publica- emotional disturbance. See the resources page to identify some of tions/anxiety-disorders/complete- these groups. index.shtml 10 Anxiety Disorders Association of America. (2010). 20 National Eating Disorders Association. (2010). Undestanding anxiety. Available online at: http:// Treatment of eating disorders. Available online at: http:// www.adaa.org/understanding-anxiety tinyurl.com/25f6v76 11 Ibid. 21 NIMH. (2010, May). Obsessive-compulsive disorder, OCD. Available online at: http://www.nimh.nih.gov/ 12 NIMH. (2010, May). Bipolar disorder. Available online health/topics/obsessive-compulsive-disorder-ocd/ at: http://www.nimh.nih.gov/health/topics/bipolar- index.shtml disorder/index.shtml 22 National Alliance for Mental Illness. (2003). Mental 13 Ibid. illnesses: Obsessive-compulsive disorder. Available online 14 American Academy of Adolescent and Child Psychia- at: http://tinyurl.com/2h2xne try. (2004, July). Conduct disorder: Facts for families. 23 International OCD Foundation. (n.d.). Treatment of Available online at: http://www.aacap.org/cs/root/ OCD. Available online at: www.ocfoundation.org/ facts_for_families/conduct_disorder treatment.aspx 15 Ibid. 24 Medline Plus. (2010, April). Psychotic disorders. 16 National Mental Health Information Center. (2003). Available online at: http://www.nlm.nih.gov/ Children’s mental health facts: Children and adolescents medlineplus/psychoticdisorders.html with conduct disorder. Available online at: http:// 25 MedicineNet.com. (n.d.). Psychotic disorders (cont.). mentalhealth.samhsa.gov/publications/allpubs/ca- Available online at: http://www.medicinenet.com/ 0010/default.asp psychotic_disorders/page2.htm 17 NIMH. (2009). Eating disorders. Available online at: http://www.nimh.nih.gov/health/publications/eating- disorders/complete-index.shtml 18 National Eating Disorders Association. (2010). Terms This publication is made possible through and definitions. Available online at: http:// Cooperative Agreement #H326N080003 between FHI www.nationaleatingdisorders.org/information- 360 and the Office of Special Education Programs, U.S. resources/general-information.php Department of Education. The contents of this document do not necessarily reflect the views or policies of 19 Weight-control Information Network. (2008, June). the Department of Education, nor does mention of Binge eating disorder. Available online at: http:// trade names, commercial products, or organizations www.win.niddk.nih.gov/publications/binge.htm imply endorsement by the U.S. Government.

NICHCY: http://nichcy.org 6 Emotional Disturbance (FS5) Resources of More Information

AACAP | American Academy of Child and National Alliance on Mental Illness (NAMI) | Adolescent Psychiatry | AACAP offers Facts for NAMI is an excellent source of information and Families, a series in English and Spanish that connection on mental illness, including the indi- includes many briefs on specific mental disorders, vidual disorders mentioned in this fact sheet. including the ones mentioned in this publication. NAMI’s website and toll-free helpline are available in English and Spanish. Fact sheets in English: http://www.aacap.org/cs/root/facts_for_families/ Toll-free Helpline Website in English facts_for_families_keyword_alphabetical 1.800.950.6264 http://www.nami.org Fact sheets in Spanish: http://www.aacap.org/cs/root/facts_for_families/ Website in Spanish informacion_para_la_familia http://tinyurl.com/28rweba AACAP also operates different Resource Centers, SAMHSA’s National Mental Health Information which offer consumer-friendly definitions, answers Center | The Center provides information and to frequently asked questions, clinical resources, referrals on mental health services to the public expert videos, Facts for Families, and much more. through its toll-free number and website. Visit the Resource Center home page if you are concerned with one of the following: • Toll-free infoline | 1.800.789.2647 Anxiety Disorders Conduct Disorder • Website | http://store.samhsa.gov/home Autism Depression Bipolar Disorder Oppositional Defiant Detailed information on specific emotional distur- Disorder bances, or related issues such as positive behavior supports, is also available from these sources: Resource Center home page http://www.aacap.org/cs/resource.centers Anxiety Disorders Association of America http://www.adaa.org

Center on Positive Behavioral Interventions and American Psychological Association | The APA is Supports | The PBIS Center provides research-based also a fountain of information and support on information on how to provide behavioral supports specific emotional disturbances. to children who need them. | www.pbis.org • English | www.apa.org/index.aspx Conduct Disorders | A soft place to land for • Spanish | www.apa.org/centrodeapoyo/ battle-weary parents index.aspx http://www.conductdisorders.com/ Encyclopedia of Mental Disorders National Institute of Mental Health | NIMH is http://www.minddisorders.com/index.html clearly a source of authoritative information on specific mental disorders. Phone: 1.866.615.6464. National Eating Disorders Association TTY: 1.866.415.8051 1.800.931.2237 | www.nationaleatingdisorders.org • English | http://www.nimh.nih.gov/health/ Something Fishy | (eating disorders) index.shtml 1.866.690.7239 | http://www.something-fishy.org • Spanish | http://www.nimh.nih.gov/health/ publications/espanol/index.shtml

NICHCY: http://nichcy.org 7 Emotional Disturbance (FS5) Deaf-Blindness

NICHCY Disability Fact Sheet #16 Updated March 2012

Introduction The National Consortium on Deaf-Blindness observes that the “key feature of deaf-blindness There are approximately 45,000 to 50,000 is that the combination of losses limits access individuals in the U.S. who are deaf-blind.1 to auditory and visual information.”3 This can According to the 2007 National Deaf-Blind severely limit an individual’s natural opportu- Child Count, more than 10,000 are children nities to learn and communicate with others. under the age of 21.2

The word “deaf-blindness” may seem as if a Finding Help for Children person cannot hear or see at all. The term with Deaf-Blindness actually describes a person who has some degree of loss in both vision and hearing. The Very young children (birth up to the third amount of loss in either vision or hearing will birthday) who are deaf-blind are typically vary from person to person. eligible for early intervention services under the Infants and Toddlers with Disabilities program Our nation’s special education law, the of IDEA (also called Part C). Individuals with Disabilities Education Act (IDEA), defines “deaf-blindness” as: These services are extremely important to children with deaf-blindness and ...concomitant [simultaneous] their families, for the services are hearing and visual impair- designed to address the child’s ments, the combination of developmental and learning which causes such severe needs. Parents are involved in communication and is the deciding what services their other developmental and National Dissemination Center child and family need to educational needs that for Children with Disabilities. address the challenges of they cannot be accom- deaf-blindness. Services modated in special NICHCY are either provided free of education programs 1825 Connecticut Avenue N.W. charge to families or on a solely for children with Washington, DC 20009 sliding cost scale based on deafness or children with 1.800.695.0285 (Voice / TTY) the family’s income. To blindness. [§300.8(c)(2)] 202.884.8200 (Voice / TTY) find the early intervention [email protected] program in your area, ask http://nichcy.org

Disability Fact Sheet #16 (FS16) your pediatrician, get in touch with the pediat- causes severe communication and other devel- ric unit of a nearby hospital, or take a look at opmental and educational needs, it’s very NICHCY’s State Sheet for your state. The central important for children with deaf-blindness to contact for the early intervention system in receive special education and related services to your state is listed under “State Agencies.” This address their individual needs. You can find out office can put you in touch with a program more about these services and how to access near you. Find the State Sheet online at: http:// them by contacting the local elementary school nichcy.org/state-organization-search-by-state in your area.

Special education | When children with deaf- Rather than duplicate the excellent work of blindness reach the age of 3, they transition others, NICHCY is pleased to connect you with into special education services under Part B of an array of information and assistance already IDEA. Special education services are provided available on deaf-blindness. What’s listed in the free through the public school system. Even if a rest of this fact sheet is not all that’s out there, child with deaf-blindness is not in school yet information-wise, but will certainly lead you to (for example, a four-year-old), the school the founts of experience and knowledge that system is still responsible for making sure that will be very helpful in addressing the chal- special education and related services are lenges associated with deaf-blindness. available to the child. Because deaf-blindness

Resources for You

About Deaf-Blindness

• FAQs about deaf-blindness. • Find what’s out there on your topic. www.aadb.org/FAQ/faq_DeafBlindness.html Search the world’s most comprehensive collection of books, articles, proceedings, • Overview of deaf-blindness. videos, and other materials about deaf- www.nationaldb.org/ blindness. NCDBProducts.php?prodID=38 http://www.nationaldb.org/ISLibrary.php

• Children who are deaf-blind. Finding Services http://www.nationaldb.org/documents/ products/population.pdf • State deaf-blind projects. Every state has a project that specializes in • Information about deaf-blindness. deaf-blindness. Find yours at the National Personal insights and information from an Consortium on Deaf-Blindness. individual with deaf-blindness. http://www.nationaldb.org/ www.deafblind.com/info-db.html ppStateDBProjects.php

• How do deaf-blind people communicate? • Visit the American Association of the Deaf-Blind. www.aadb.org/factsheets/ AADB provides a listing of state and local db_communications.html organizations for deaf-blind people and also a listing of service and rehabilitation agencies • The Deafblind Manual Alphabet. around the country. www.deafblind.com/card.html http://www.aadb.org/resources/ resources.html

NICHCY: http://nichcy.org 2 Deaf-Blindness (FS16) The Experts on Deaf-Blindness School Matters

• National Consortium on Deaf-Blindness • Considerations when teaching students who are http://www.nationaldb.org deaf-blind (NETAC Teacher Tipsheet). http://wwwcms.hutchcc.edu/uploadedFiles/ • Helen Keller National Center for Deaf-Blind Student_Resources/Disability_Services/ Youths and Adults (HKNC) tpshtdb.pdf http://www.hknc.org • Teacher packet. • American Association of the Deaf-Blind (AADB) A selection of articles, fact sheets, bibliogra- http://www.aadb.org phies, and state resources organized to provide information for the teacher who is • Deafblind International new to the deaf-blind student. http:// http://www.deafblindinternational.org/ www.nationaldb.org/ NCDBProducts.php?prodID=48 In Children’s Early Years Transition to Adulthood for • Early interactions with children who are deaf-blind. Students with Deaf-Blind http://www.nationaldb.org/ • Transition planning for students with deaf- NCDBProducts.php?prodID=34 blindness. • Communication at home and in the community. http://nationaldb.org/documents/products/ Helpful strategies and suggestions from transition01-09.pdf parents and families with a child who is deaf- • More on transition planning: Coaching for blind. students, parents, and professionals. http://www.nationaldb.org/documents/ http://centerondeafness.utk.edu/pec/ products/parent99.pdf transition%20planning%20for%20deafblind.pdf • Communication fact sheets for parents. • Self-determination for students who are deaf- http://www.nationaldb.org/documents/ blind. products/communication-a.pdf http://www.nationaldb.org/documents/ • Talking the language of the hands to the hands. products/self-determ.pdf This publication examines the importance of • National Transition Follow-Up Study of Youth hands for the person who is deaf-blind, Identified as Deaf-blind: Parent Perspectives. reviews hand development, and identifies http://www.nationaldb.org/documents/ specific teaching skills that facilitate hand products/transition.PDF development and expressiveness in persons who are deaf-blind. For Administrators http://www.nationaldb.org/ NCDBProducts.php?prodID=47 • Deaf-Blind Child Counts: Issues and challenges. http://www.projectforum.org/docs/Deaf- • The intervener in early intervention and educa- BlindChildCounts-IssuesandChallenges.pdf tional settings for children with deaf-blindness. http://www.nationaldb.org/documents/ • National Deaf-Blind Child Counts. products/intervener.pdf The National Deaf-Blind Child Count, reported by each state’s Project for Children and Youth who are Deaf-Blind, is collected annually on December 1 of each year and is a “snapshot” of the characteristics, educational

NICHCY: http://nichcy.org 3 Deaf-Blindness (FS16) settings and living arrangements of children Resources in Spanish and youth who fit the state project’s definition of being deaf-blind as of that date. The • Visit the National Consortium on Deaf- Annual Reports from 2004 through 2010 are Blindness, where you’ll find many fact sheets available in PDF, at: www.nationaldb.org/ and other resources available in Spanish. TAChildCount.php#Summaries http://www.nationaldb.org/ISProductos.php

• Psychological evaluation of children • English/Spanish Specialized Deaf-Blind Glossary/ who are deaf-blind. Espanol Glosario Especializado En Sordoceguera. This fact sheet provides answers to frequently http://www.nationaldb.org/documents/ asked questions about psychological evalua- products/esgloss.pdf tions for infants, children, and adults who are deaf-blind. http://www.nationaldb.org/ References NCDBProducts.php?prodID=40 1 Gallaudet University. (2004). FAQ: Deaf-blind • Recommendations on the training of interveners in the U.S. Retrieved February 19, 2009, from: for students who are deaf-blind. http://library.gallaudet.edu/Library/ http://www.dblink.org/pdf/intervener- Deaf_Research_Help/ train.pdf Frequently_Asked_Questions_(FAQs)/ • Service delivery in rural areas. Statistics_on_Deafness/Deaf- Here’s a manual or blueprint for rural agen- Blind_in_the_US.html cies to develop deaf-blind services in their 2 National Consortium on Deaf-Blindness. local areas. (2008, September). The 2007 national child http://resources.pepnet.org/files/ count of children and youth who are deaf-blind. 107_2009_5_18_18_08_PM.pdf Retrieved February 19, 2009, from: http:// www.nationaldb.org/documents/products/ 2007-Census-Tables.pdf

3 National Consortium on Deaf-Blindness. (2007, November). Children who are deaf- blind. Retrieved February 19, 2009, from: www.nationaldb.org/documents/products/ population.pdf

NICHCY Disability Fact Sheet #16 Updated March 2012

NICHCY: http://nichcy.org 4 Deaf-Blindness (FS16) Deafness and Hearing Loss Caroline’s Story

Caroline is six years old, A publication of NICHCY with bright brown eyes and, at Disability Fact Sheet #3 June 2010 the moment, no front teeth, like so many other first graders. She also wears a hearing aid in each ear—and has done so since she was three, when she Caroline was immediately Hearing Loss was diagnosed with a moderate fitted with hearing aids. She in Children hearing loss. also began receiving special education and related services Hearing is one of our five For Caroline’s parents, there through the public school senses. Hearing gives us access were many clues along the way. system. Now in the first grade, to sounds in the world around Caroline often didn’t respond she regularly gets speech us—people’s voices, their to her name if her back was therapy and other services, and words, a car horn blown in turned. She didn’t startle at her speech has improved warning or as hello! noises that made other people dramatically. So has her vocabu- jump. She liked the TV on loud. lary and her attentiveness. She When a child has a hearing But it was the preschool she sits in the front row in class, an loss, it is cause for immediate started attending when she was accommodation that helps her attention. That’s because three that first put the clues hear the teacher clearly. She’s language and communication together and suggested to back on track, soaking up new skills develop most rapidly in Caroline’s parents that they information like a sponge, and childhood, especially before the have her hearing checked. The eager for more. age of 3. When hearing loss most significant clue to the goes undetected, children are preschool was Caroline’s delayed in developing these unclear speech, especially the skills.1 lack of consonants like “d” and Recognizing the importance “t” at the end of words. of early detection, the Centers So Caroline’s parents took is the for Disease Control and Preven- tion (the CDC) recommends her to an audiologist, who National Dissemination Center that every newborn be screened collected a full medical history, for Children with Disabilities. examined the little girl’s ears for hearing loss as early as possible, usually before they inside and out, ran a battery of NICHCY leave the hospital. Catching a hearing tests and other assess- 1825 Connecticut Avenue N.W. hearing loss early means that ments, and eventually diag- Washington, DC 20009 treatment can start early as well nosed that Caroline’s inner ear 1.800.695.0285 (Voice / TTY) and “help the child develop (the cochlea) was damaged. The 202.884.8200 (Voice / TTY) communication and language audiologist said she had senso- [email protected] skills that will last a lifetime.”2 rineural hearing loss. http://nichcy.org

Disability Fact Sheet #3 (FS3) Types of Hearing Loss cells of the inner ear or the How Common is nerves that supply it. These Hearing Loss? Before we describe the types hearing losses can range from of hearing loss a person may mild to profound. They often Each year in the United have, it’s useful to know that affect the person’s ability to States, more than 12,000 babies sound is measured by: hear certain frequencies more are born with a hearing loss; than others. Thus, even with 4 • its loudness or intensity often, the cause is unknown. amplification to increase the (measured in units called Profound deafness occurs in 4- sound level, a person with a decibels, dB); and 11 per 10,000 children; in at sensorineural hearing loss may least 50% of these cases, the • its frequency or pitch perceive distorted sounds, cause is genetic.5 (measured in units called sometimes making the success- hertz, Hz). ful use of a hearing aid impos- Through the Universal sible. Newborn Hearing Screening Hearing loss is generally program, many states now described as slight, mild, mod- A mixed hearing loss refers to mandate that all newborns be erate, severe, or profound, a combination of conductive screened for hearing loss within depending upon how well a and sensorineural loss and hours of birth.7 person can hear the intensities means that a problem occurs in or frequencies most strongly both the outer or middle and Signs of a Hearing Loss associated with speech. Impair- the inner ear. or Deafness ments in hearing can occur in A central hearing loss either or both areas, and may Just as with Caroline, our results from damage or impair- exist in only one ear or in both first grader, there will be signs ment to the nerves or nuclei of ears. Generally, only children that a child may not be hearing the central nervous system, whose hearing loss is greater normally. Parents may notice either in the pathways to the than 90 decibels (dB) are that their child: brain or in the brain itself. considered deaf. A diagram of the ear.6 There are four types of hearing loss, as follows.3 Outer ear Middle ear Inner ear Conductive hearing losses are caused by Semicircular diseases or obstructions in canals the outer or middle ear (the pathways for sound to reach the inner ear). Conductive hearing losses usually affect all frequen- Pinnus cies of hearing evenly Auditory and do not result in nerve severe losses. A person with a conductive hearing loss usually is able to use a hearing aid well or can be helped medically or External surgically. auditory canal Sensorineural hearing Eustachian Cochlea losses result from damage Eardrum tube to the delicate sensory hair

NICHCY: http://nichcy.org 2 Deafness and Hearing Loss (FS3) • does not respond • complications during To access early interven- consistently to sounds or pregnancy (such as tion: To identify the EI to his or her own name; the Rh factor, program in your neigh- maternal diabetes, borhood, consult • asks for things to be re- or toxicity). NICHCY’s State-Specific peated or often says “huh?” Information for your A child’s hearing • is delayed in developing state (online at: http:// loss or deafness may nichcy.org/state- speech or has unclear also be a characteristic speech; organization-search-by- of another disability state). Early interven- • turns the volume up loud such as Down syn- tion is listed under the on the TV and other elec- drome, Usher syndrome, first section, State Agen- tronic devices.8 Treacher Collins syn- cies. The agency that’s drome, Crouzon syn- identified will be able to Causes of Hearing Loss 10 drome, and Alport syndrome. put you in contact with the and Deafness In all cases, early detection early intervention program in your community. There, you can Hearing loss and deafness and treatment are very impor- have your child evaluated free can be either: tant to the child’s development. of charge and, if found eligible, • acquired, meaning that the Is There your child can begin receiving loss occurred after birth, due Help Available? early intervention services. to illness or injury; or Yes, there’s a lot of help To access special education and • congenital, meaning that the available, beginning with the related services: We recommend hearing loss or deafness was free evaluation of the child. The that you get in touch with your present at birth. nation’s special education law, local public school system. Calling the elementary school The most common cause of the Individuals with Disabilities Education Act (IDEA), requires in your neighborhood is an acquired hearing loss is expo- excellent place to start. The 9 that all children suspected of sure to noise. Other causes can school should be able to tell include: having a disability be evaluated without cost to their parents to you the next steps to having • build up of fluid behind the determine if they do have a your child evaluated free of eardrum; disability and, because of the charge and, if found eligible, he disability, need special services or she can begin receiving • ear infections (known as under IDEA. Those special services specially designed to otitis media); services are: address your child’s needs. • childhood diseases, such as • Early intervention | There are also special mumps, measles, or chicken A system of services to services available to low-income pox; and support infants and toddlers children through the Early Periodic Screening, Diagnosis, • head trauma. with disabilities (before their 3rd birthday) and their and Treatment (EPSDT) pro- Congenital causes of hear- families. gram, the child health compo- ing loss and deafness include: nent of Medicaid. To learn more • Special education and about the EPSDT program, visit: • a family history of hearing related services | Services http://mchb.hrsa.gov/epsdt/ loss or deafness; available through the public • infections during pregnancy school system for school- (such as rubella); aged children, including preschoolers (ages 3-21).

NICHCY: http://nichcy.org 3 Deafness and Hearing Loss (FS3) More on IDEA “hearing impairment.”12 How- ever, the number of children It’s helpful to know that, with hearing loss and deafness while the terms “hearing im- is undoubtedly higher, since pairment” and “hearing loss” many of these students have are often used to describe a other disabilities and may be wide range of hearing losses, served under other categories. including deafness, IDEA actually defines the two terms Educational Implications separately, as follows: Hearing loss or deafness Hearing impairment is does not affect a person’s idiomatic expressions, and defined by IDEA as “an intellectual capacity or ability to other aspects of verbal commu- impairment in hearing, learn. However, children who nication. For children who are whether permanent or are hard of hearing or deaf deaf or have severe hearing fluctuating, that generally require some form of losses, early, consistent, and adversely affects a special education services in conscious use of visible com- child’s educational order to receive an adequate munication modes (such as sign performance.” education. Such services may language, fingerspelling, and include: Cued Speech) and/or amplifica- Deafness is defined as tion and aural/oral training can “a hearing impairment • regular speech, language, help reduce this language delay. that is so severe that the and auditory training from a By age four or five, most chil- child is impaired in specialist; dren who are deaf are enrolled processing linguistic in school on a full-day basis • amplification systems; information through and do special work on com- hearing, with or with- • services of an interpreter for munication and language out amplification.” those students who use sign development. language; Thus, deafness is viewed as a It is important for teachers condition that prevents an • favorable seating in the class and audiologists to work to- individual from receiving sound to facilitate lip reading; gether to teach the child to use in all or most of its forms. In his or her residual hearing to contrast, a child with a hearing • captioned films/videos; the maximum extent possible, loss can generally respond to • assistance of a notetaker, even if the preferred means of auditory stimuli, including who takes notes for the communication is manual. speech. student with a hearing loss, Since the great majority of deaf children (over 90%) are born to The U.S. Department of so that the student can fully hearing parents, programs Education reports that 14,787 attend to instruction; should provide instruction for children received audiology • instruction for the teacher parents on implications of services in early intervention and peers in alternate deafness within the family. programs in the fall of 2004, communication methods, while 139,643 children received such as sign language; and People with hearing loss use speech-language pathology oral or manual means of com- services.11 • counseling. munication or a combination of the two. Oral communication The Department also reports Children who are hard of includes speech, lip reading, that, during the 2003 school hearing will find it much more and the use of residual hearing. year, 79,522 students aged 3 to difficult than children who have Manual communication in- 21 received special education normal hearing to learn vocabu- volves signs and fingerspelling. services under the category of lary, grammar, word order, Total Communication, as a

NICHCY: http://nichcy.org 4 Deafness and Hearing Loss (FS3) method of instruction, is a References combination of the oral method plus signing and 1 March of Dimes. (2007). Hearing impairment. Available online at: fingerspelling. www.marchofdimes.com/professionals/14332_1232.asp Using the Relay Service 2 Centers for Disease Control and Prevention. (2010). Early Hearing Detection & Intervention (EHDI) program: EHDI basics. Available online at: Individuals with hearing www.cdc.gov/ncbddd/ehdi/default.htm loss, including those who are 3 eHealthMD. (n.d.). Different types of hearing loss. Available online at: deaf, now have many helpful www.ehealthmd.com/library/hearingloss/HL_types.html devices available to them. Text telephones (known as TTs, 4 Centers for Disease Control and Prevention. (2010). Early Hearing Detec- TTYs, or TDDs) enable persons tion & Intervention (EHDI) program: EHDI basics. Available online at: to type phone messages over www.cdc.gov/ncbddd/ehdi/default.htm the telephone network. 5 American Speech-Language-Hearing Association. (n.d.). The prevalence The Telecommunications and incidence of hearing loss in children. Available online at: http:// Relay Service (TRS) makes it www.asha.org/public/hearing/disorders/children.htm possible for TT users to com- 6 Michigan Department of Community Health. (2004). A diagram of the municate with virtually anyone ear. Available online at: www.michigan.gov/documents/mdch/ (and vice versa) via telephone DCH0519A_201145_7.pdf through a communications 7 assistant. Dial 711 to access all National Center for Hearing Assessment & Management. (n.d.). Status of telecommunications relay early hearing detection and intervention in the United States. Available online at: www.infanthearing.org/status/index.html services anywhere in the United States. The relay service is free. 8 American Speech-Language-Hearing Association. (n.d.). How do I know if I have a hearing loss? Available online at: www.asha.org/public/hearing/ disorders/how_know.htm 9 The Merck Manual’s Online Medical Library. (2007, April). Hearing loss and deafness. Available online at: http://www.merck.com/mmhe/sec19/ ch218/ch218a.html 10 American Speech-Language-Hearing Association. (n.d.). Causes of hearing loss. Available online at: www.asha.org/public/hearing/disorders/ causes.htm 11 U.S. Department of Education. (2006). Table 6-6. Infants and toddlers ages birth through 2 served under IDEA, Part C, by type of service on the individualized family service plan (IFSP) and state: Fall 2004. Available online at: https://www.ideadata.org/tables29th/ar_6-6.htm 12 U.S. Department of Education. (2007). 27th annual report to Congress on the implementation of the Individuals with Disabilities Education Act, 2005 (Vol. 2). Washington, DC: Author.

NICHCY: http://nichcy.org 5 Deafness and Hearing Loss (FS3) Resources of Additional Information

In alphabetical order, here’s a starter list of organizations providing info and guidance on deafness and hearing loss. Explore the sites below and the wealth of material they offer on types of hearing loss, newborn and early childhood screening, the EHDI program for early detection of hearing loss, guidance for parents, suggestions for educators working with children who are deaf or hard of hearing, and much more.

Organizations Info to Go | Laurent Clerc To Parents of Deaf Children | National Deaf Education Center http://www.deaf-culture- Alexander Graham Bell Associa- 202.651.5051 online.com/parents-of-deaf- tion for the Deaf and Hard of http://www.gallaudet.edu/ children.html Hearing | www.agbell.org clerc_center/ Early Intervention American Hearing Research information_and_resources/ info_to_go.html www.infanthearing.org/ Foundation | www.american- earlyintervention/index.html hearing.org Listen Up! | www.listen-up.org Assistive Technology for Hearing American Society for Deaf Medline Plus www.asha.org/public/hearing/ Children |1.800.942.2732 www.nlm.nih.gov/medlineplus/ treatment/assist_tech.htm www.deafchildren.org/ hearingdisordersanddeafness.html Communications ASHA | American Speech- National Association of the Deaf Considerations A-Z | Language-Hearing Association www.nad.org www.handsandvoices.org/ 1.800.638.8255 comcon/index.html www.asha.org/public/hearing/ National Center for Hearing Assessment & Management Communication Plan for a Beginnings | For parents of chil- 435.797.3584 Child Who is Deaf or Hard of dren who are deaf or hard of hearing www.infanthearing.org/ Hearing www.ncbegin.org/index.php www.handsandvoices.org/pdf/ NIDCD | National Institute communication_plan.pdf Better Hearing Institute on Deafness and Other 1.800.327.9355 Communication Disorders Cochlear Implants | http:// www.betterhearing.org 1.800.241.1044 www.nidcd.nih.gov/health/ CDC | Centers for Disease http://www.nidcd.nih.gov/health/ hearing/pages/coch.aspx hearing/Pages/Default.aspx Control and Prevention Resources for People Who 1.800.CDC.INFO PEPNET | Working to increase Can't Afford Hearing Aids and http://www.cdc.gov/ncbddd/ access to postsecondary education for Cochlear Implants | hearingloss/index.html persons who are deaf. www.hearingexchange.com/ Deaf Culture Online www.pepnet.org articles/paulas-110601.htm www.deaf-culture-online.com/ Strategies for Teachers index.html Helpful Readings www.as.wvu.edu/~scidis/ Hands and Voices on Specific Subjects hearing.html www.handsandvoices.org/ Tips for Teachers Your Child’s Hearing http://deafness.about.com/od/ Hearing Loss Association of Development Checklist | schooling/a/inclassroom.htm America | www.hearingloss.org/ www.nidcd.nih.gov/health/ How’s Your Hearing? hearing/pages/silence.aspx www.howsyourhearing.com/

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

NICHCY Disability Fact Sheet #9 Updated March 2012

Introduction expected, more or less on child. First, know that there’s that broad schedule, that help available to find out just Think of all the skills that parents and caregivers may what the difficulties are, if children have to learn when become concerned. any, and there’s help avail- they come into the world: able to address those difficul- smiling, turning over, re- If You’re Concerned About ties. The good news is that sponding to people, commu- this help is usually free, and nicating, eating solid food, a Child’s Development it’s available in every state. crawling, standing, and on and on. We expect these skills If you’re reading this, First, you may want to to emerge naturally over time perhaps you’ve become talk with your pediatrician and know more or less when concerned about your child about your child’s develop- they should. At 3 months, or one you care for. We’re ment. Don’t be surprised if Susana will probably be glad you’re reading this, the pediatrician tells you not doing this, at 4 months, she’ll because there are many to worry, to be patient, to be doing that. By a year, well, immediate things you can do give your child more time to she’ll be tottering around, to learn more and help your develop. Often, that’s what getting into everything. parents hear, especially in the early stages of investigating This timetable for skills their child’s seeming delays. to emerge is commonly And it’s often true. Children called the developmental develop at different rates; the milestones. What’s consid- pediatrician is well aware that ered normal development many children show sudden is described broadly, is the bursts in development rather because children don’t National Dissemination Center than slow, steady growth. necessarily learn skills at for Children with Disabilities. the same pace. Two differ- On the other hand, your ent children born on the NICHCY pediatrician may suggest that same day may learn the 1825 Connecticut Avenue N.W. a developmental screening be same skill months apart, Washington, DC 20009 conducted to see if, in fact, and both can be consid- 1.800.695.0285 (Voice / TTY) your child is experiencing a ered “on schedule.” It’s 202.884.8200 (Voice / TTY) developmental delay. The when skills don't emerge as [email protected] screening is a quick, general http://nichcy.org measure of your child’s skills

Disability Fact Sheet #9 (FS9) and development. It’s not detailed enough to • Nursing services make a diagnosis, but its results indicate broadly whether or not a child should be • Nutrition services referred for a more indepth developmental evaluation. • Occupational therapy

What’s Involved in the • Physical therapy Developmental Evaluation • Psychological services The developmental evaluation should be conducted by a highly trained professional who can use the results to create a profile of your Things to Know child’s strengths and weaknesses across the range of five developmental areas. Those areas • States have a positive are: obligation to help children who are experiencing a develop- • Physical development (fine motor skills, mental delay in one or more areas. gross motor skills) • Through the Child Find system that each • Cognitive development (intellectual state operates, developmental screenings abilities) and developmental evaluations are usually provided free of charge to families. • Communication development (speech and language) • If you’re concerned about your child’s development, talk to your child’s pediatri- • Social or emotional development (social cian, who can refer you to the Child Find skills, emotional control) system in your area.

• Adaptive development (self-care skills) • Early intervention services are meant for children under the age of three. These The results of the developmental evaluation services are usually provided to eligible will be used to decide if your child needs early families either free of charge or on a sliding intervention services and/or a treatment plan. payment scale that’s determined by the Early intervention services are specifically family's income. tailored to meet a child’s individual needs and, as such, are a very important resource to chil- • You can find out how to access early inter- dren experiencing developmental delays. vention services in your area by talking to your child’s pediatrician, calling a local For example, early intervention services can hospital, or using NICHCY’s State Resource include: Sheet for your state. All of our state sheets • Assistive technology (devices a child might are available online, this moment, at: http:/ need) /nichcy.org/state-organization-search-by- state • Audiology or hearing services Once you’ve selected a state sheet to view, • Speech and language services select “State Agencies” from the drop-down menu and click SEARCH. The contact informa- • Counseling and training for a family tion for the early intervention program for your state will appear in the list of state agencies you • Medical services receive.

NICHCY: http://nichcy.org 2 Developmental Delay(FS9) • NECTAC (the National Early Childhood It’s a good idea to find out if your state has Technical Assistance Center) is also a great added details to this definition of developmental source of this information. Use NECTAC’s delay. States are allowed to do so, if they Contact Finder at: http://www.nectac.org/ choose. They also decide on the age range of contact/contact.asp children with whom the term may be used (3-5, 3-9, or any subset between 3-9). Your local • Special education services are meant for school or early intervention program should be children over the age of three. Services are able to tell you the definition of developmental provided to eligible children free of charge delay that’s used in your area. You can also through the public school system. If your visit NECTAC (mentioned earlier) and find out child has passed his or her third birthday how your state defines developmental delay, as and you’re concerned about a developmen- well as the criteria of eligibility for services to tal delay or disability, call your local school young children, birth through 2 years of age, (even if your child isn’t enrolled there). Ask and their families. NECTAC makes this infor- how and where to have your child evalu- mation available online at: http:// ated under IDEA, our nation’s special www.nectac.org/~pdfs/pubs/nnotes21.pdf education law. It may be helpful to know that:

IDEA’s Definition • your state may not require that your local of Developmental Delay school district also adopt and use the term developmental delay in working with As we just said, IDEA is the nation’s special children; education law. Its full name is the Individuals with Disabilities Education Act. Through IDEA, • if your local school district decides to use early intervention services and special educa- the term, it must use the same definition tion services are made available to eligible and age range as the state does; children with developmental delays and disabilities. • your local school district may not use the term at all if your state has chosen not to Not surprisingly, IDEA includes a definition use the term. of developmental delay, which may be useful to know. Here it is:

Child with a disability for children aged three through nine (or any subset of that age range, including ages three through five), may...include a child—

(1) Who is experiencing developmental delays as defined by the State and as measured by appropriate diagnostic instruments and procedures in one or more of the following areas: Physical development, cognitive development, communication development, social or emotional development, or adaptive development; and

(2) Who, by reason thereof, needs special education and related services. [34 CFR §300.8(b)]

NICHCY: http://nichcy.org 3 Developmental Delay(FS9) Resources for You

It can be very helpful to read more about developmental delay. This has been just a brief overview, with pointers to loads of additional info and support. Below, we’ve identified a range of materials you can explore, which will of course lead you to still more!

• Child development. • First Signs. All about...from the CDC, the Centers for All about early detection of developmental Disease Control and Prevention. delays and disabilities, especially autism. http://www.cdc.gov/ncbddd/ http://www.firstsigns.org/ childdevelopment/index.html • Connect with other parents. • Developmental screening. Interested in talking to other parents whose From CDC, the Centers for Disease Control children have developmental delays? Try and Prevention. Parent to Parent. They’ll connect you with http://www.cdc.gov/ncbddd/ other parents like yourself for support and childdevelopment/screening.html exchange. http://www.p2pusa.org • Developmental milestones. From NICHCY’s own site. • Connect with the disability community and http://nichcy.org/disability/milestones/ parent expertise. Every state has a Parent Training and • What is developmental delay? Information Center, known as the PTI. From How Kids Develop. Some states have several. If you are looking http://www.howkidsdevelop.com/ to connect with state and local resources, or developDevDelay.html have questions about services and parent rights, talk to your PTI. Find the PTI for • Developmental delay. your state by visiting our State Resource From the Encyclopedia of Children’s Sheets, at: Health. http://nichcy.org/state-organization-search- http://www.healthofchildren.com/D/ by-state Developmental-Delay.html

• Developmental delays. From Keep Kids Healthy. http://www.keepkidshealthy.com/welcome/ conditions/developmentaldelays.html

NICHCY Disability Fact Sheet #9 Updated March 2012

NICHCY: http://nichcy.org 4 Developmental Delay(FS9) Down Syndrome

NICHCY Disability Fact Sheet #4 June 2010

Definition families and members of the Incidence of school’s education team place Down Syndrome Down syndrome is the few limitations on potential most common and readily capabilities and possible Nearly 5,000 babies are identifiable chromosomal achievements. Each child with born with Down syndrome in condition associated with Down syndrome has his or her the United States each year.2 intellectual disabilities. It is own talents and unique This means that 1 in every 733 caused by a chromosomal capacities, and it’s important babies is born with this abnormality: for some un- to recognize these and rein- condition.3 Although parents known reason, an accident in force them. As the Family of any age may have a child cell development results in 47 Doctor website states: with Down syndrome, 80% instead of the usual 46 chro- In many important are born to women under the mosomes. This extra chromo- age of 35.4 some changes the orderly ways, children who development of the body and have Down syndrome brain. In most cases, the are very much the diagnosis of Down syndrome same as other children. is made according to results They have the same from a chromosome test moods and emotions, administered shortly after and they like to learn birth. new things, to play and enjoy life. You can help Just as in the normal your child by providing population, there is a wide as many chances as is the variation in mental abilities, possible for him or her National Dissemination Center behavior, and developmental to do these things. for Children with Disabilities. progress in individuals with Read to your child and Down syndrome. Their level of play with him or her, NICHCY intellectual disability may just as you would any 1825 Connecticut Avenue N.W. range from mild to severe, other child. Help your Washington, DC 20009 with the majority functioning child to have positive 1.800.695.0285 (Voice / TTY) in the mild to moderate range. experiences with new 202.884.8200 (Voice / TTY) people and places.1 Because children with [email protected] Down syndrome differ in http://nichcy.org ability, it’s important that

Disability Fact Sheet #4 (FS4) Down syndrome is not a Help for the unique needs disease, nor is it contagious. Its Babies and Toddlers of the family, so most common forms usually that parents and do not occur more than once When a baby is other family in a family. born with Down members will syndrome, his or her know how to Characteristics of parents should know help their young Down Syndrome that there’s a lot of child with Down help available—and syndrome. Early intervention There are over 50 clinical immediately. Shortly services may be signs of Down syndrome, but after the diagnosis of provided on a it is rare to find all or even Down syndrome is con- sliding-fee basis, most of them in one person. firmed, parents will want to meaning that the costs to the Every child with Down syn- get in touch with the early family will depend upon their drome is different. Some intervention system in their income. common characteristics community. include: Early intervention is a Help for • Poor muscle tone; system of services designed to help infants and toddlers with School-Aged Children • Slanting eyes with folds of disabilities (before their 3rd Just as IDEA requires that skin at the inner corners birthday) and their families. early intervention be made (called epicanthal folds); It’s mandated by federal law— available to babies and tod- the Individuals with Disabili- • Hyperflexibility (excessive dlers with disabilities, it ties Education Act (IDEA), the ability to extend the joints); requires that special educa- nation’s special education law. tion and related services be Staff work with the child’s • Short, broad hands with a made available free of charge family to develop what is single crease across the to every eligible child with a known as an Individualized palm on one or both disability, including Family Services Plan, or IFSP. hands; preschoolers (ages 3-21). The IFSP will describe the These services are specially • Broad feet with short toes; child’s unique needs as well as designed to address the child’s the services he or she will • Flat bridge of the nose; individual needs associated receive to address those needs. with the disability—in this The IFSP will also emphasize • Short, low-set ears; and case, Down syndrome. • Short neck and small head;

• Small oral cavity; and/or To Help Babies and Toddlers: • Short, high-pitched cries in infancy. Accessing the Early Intervention System in Your State

Individuals with Down To access early intervention services for a child up to his or her syndrome are usually smaller 3rd birthday, consult NICHCY’s State Resource Sheet for your than their nondisabled peers, state. It’s available online at: http://nichcy.org/state-organiza- and their physical as well as tion-search-by-state intellectual development is slower. There, you’ll find a listing for early intervention under the first section, State Agencies. The agency listed will be able to put you in contact with the early intervention program in your community.

NICHCY: 1.800.695.0285 2 Down Syndrome (FS4) There is a lot to know about to have their child the special education process, examined by a physi- much of which you can learn cian to determine at NICHCY, which offers a whether or not their wide range of publications on child should be the topic. To begin, however, restricted from sports and access special education and activities which services for a school-aged child place stress on the in your area, get in touch with neck. Although this your local public school misalignment is a system. Calling the elementary potentially serious school in your neighborhood condition, proper is an excellent place to start. diagnosis can help prevent especially our parent’s guide serious injury. called Developing Your Child’s Health Children with Down IEP—all of which can help Considerations syndrome may have a ten- parents learn how to partici- dency to become obese as they pate effectively in their child’s Besides having a distinct grow older. Besides having education. physical appearance, children negative social implications, Much information is also with Down syndrome fre- this weight gain threatens available for teachers to learn quently have specific health- these individuals’ health and more about effective teaching related problems. A lowered longevity. A supervised diet practices for children with resistance to infection makes and exercise program may Down syndrome. It’s impor- these children more prone to help reduce this problem. respiratory problems. Visual tant for teachers to take into consideration the degree of problems such as crossed eyes Educating Children with and far- or nearsightedness are intellectual disability involved, common in individuals with Down Syndrome the child’s talents and inter- Down syndrome, as are mild ests, and the supports and to moderate hearing loss and When a child with Down services he or she needs, as speech difficulty. syndrome reaches school age specified in the IEP. Generally (after the 3rd birthday), the speaking, teachers will find it Approximately one third of public school system becomes more effective to emphasize babies born with Down responsible for educating the concrete concepts with a syndrome have heart defects, child and for addressing the student who has Down most of which are now suc- child’s unique needs related to syndrome, instead of abstract cessfully correctable. Some his or her disability. Parents ideas. Teaching skills in a step- individuals are born with and school personnel will by-step fashion with frequent gastrointestinal tract problems work together to develop what reinforcement and consistent that can be surgically cor- is known as an Individualized feedback has proven success- rected. Education Program (IEP) for ful. Other suggestions for the child. The IEP is similar to teachers are given on the last Some people with Down an IFSP in that it describes the page of this fact sheet. syndrome also may have a child’s unique needs and the condition known as Atlanto- services that will be provided Today, the majority of axial Instability, a misalignment to meet those needs. The IEP children with Down syndrome of the top two vertebrae of the will include annual goals for are educated in the regular neck. This condition makes learning and much more. classroom, alongside their these individuals more prone NICHCY offers a great deal of peers without disabilities. This to injury if they participate in information about the process is in keeping with the inclu- activities which overextend or for developing an IEP— sion movement of the last flex the neck. Parents are urged decade and the requirements

NICHCY: 1.800.695.0285 3 Down Syndrome (FS4) Equally clear is this require- syndrome, it’s usually impor- ment of IDEA: tant to begin earlier than that.

A child with a disability Adult life for individuals [may not be] removed with Down syndrome has from education in age- changed noticeably from just appropriate regular two decades ago. Opportuni- classrooms solely ties to live and work indepen- because of needed dently in the community have modifications in the greatly expanded for those general education with Down syndrome. This curriculum.6 owes much to the more inclusive and comprehensive For High School Students education IDEA promotes and to improved public attitudes with Down Syndrome towards disability. Today, there’s a nationwide network While the student is still in of independent living centers, secondary school, parents, the of IDEA, which states that as well as apartments that are IEP team, and the student each school system must group-shared and supervised himself (or herself!) will need ensure that: for those who need this level to plan for the future and the of support. Training, educa- Special classes, separate student’s life as an adult. This tion, and assistance are also schooling, or other involves considering, for available to eligible adults removal of children example, issues such as em- with Down syndrome through with disabilities from ployment (with or without service systems such as Voca- the regular educational supports), independent living tional Rehabilitation and environment occurs and self-care skills, the possi- Social Security. Adult life only if the nature or bility of higher education or holds many opportunities for severity of the disability vocational training, and how those with Down syndrome, is such that education to connect with adult service so it’s important to plan ahead in regular classes with systems. Under IDEA, the with optimism and vigor. the use of supplemen- process of planning for transi- tary aids and services tion to adulthood should cannot be achieved begin no later than the satisfactorily.5 student’s 16th birthday.7 For adolescents with Down

References

1 Family Doctor. (2005). Down Syndrome: Finding out your child has Down 4 Ibid. syndrome. Available online at: http://familydoctor.org/online/famdocen/ 5 home/children/parents/special/birth/338.html 34 CFR §300.114(a)(2)(ii) of IDEA. 2 National Down Syndrome Congress. (n.d.). Facts about Down syndrome. 6 Available online at: http://www.ndsccenter.org/?page_id=614 34 CFR §300.116(e) of IDEA. 7 34 CFR §300.320(b) of IDEA, 3 National Down Syndrome Society. (n.d.) Down syndrome fact sheet. Transition services. Available online at: http://www.ndss.org/ index.php?option=com_content&view=article&id=54:down-syndrome- fact-sheet&catid=35:about-down-syndrome&Itemid=74

NICHCY: 1.800.695.0285 4 Down Syndrome (FS4) Tips for Parents • Find out what your child is learning • Learn about Down syndrome. The at school. Look for ways to apply it at more you know, the more you can home. For example, if the teacher is help yourself and your child. See the reviewing concepts of money, take your list of organizations below. child to the supermarket with you to • Love and play with your child. Treat help keep track of what money you’re your son or daughter as you would a spending. child without disabilities. Take your • Look for social opportunities in the child places, read together, have fun. community (such as Scouts) or activities • Encourage your child to be independent. offered through the department of sports For example, help your son or daughter and leisure. Joining in and taking part will learn self-care skills such as getting dressed, help your child develop social skills and grooming, and doing laundry. have fun.

• Give your child chores. Keep in mind his or • Talk with other parents whose children her age, mental capacity, attention span, have Down syndrome. They can be a and abilities. Divide tasks into small steps. fountain of practical advice and emotional Explain what your child is supposed to do, support. Visit the websites of the organiza- step by step, until the chore is done. Dem- tions listed below to see if they have a onstrate. Offer help when it’s needed and parent group nearby. praise when things go well. • Be patient, be hopeful. Your child, like • Work with the professionals who are every child, has a whole lifetime to learn working with your child. Participate in and grow. team meetings where your child’s educa- • Take pleasure in your beautiful one. He— tion or program is being planned, share she—is a treasure. Learn from your child, your unique knowledge of who your son or too. Those with Down syndrome have a daughter is, advocate that the program special light within—let it shine. address your child’s needs.

Organizations NDSS offers authoritative information about National Down Syndrome Society Down syndrome, including a new parent video, A 1.800.221.4602 | www.ndss.org/ (English) Promising Future Together: A Guide for New Parents http://esp.ndss.org/index.php (Spanish) of Children with Down Syndrome

National Down Syndrome Congress NDSC is also an authoritative source of informa- 1.800.232.6372 | www.ndsccenter.org (English) tion on Down syndrome, offering such resources www.ndsccenter.org/espanol/ (Spanish) as its New Parent Package, a collection of materials refined over years to provide new and expectant Resource of Special Note parents with an initial understanding of the challenges— and joys—of raising a child with Woodbine House publishes an impressive collection Down syndrome. of low-cost books and DVDs on Down syndrome, including a Parent’s Guide (in English and Spanish) and materials for teachers. Call 1.800.843.7323 or visit: www.woodbinehouse.com/Down- Syndrome.29.0.0.2.htm

NICHCY: 1.800.695.0285 5 Down Syndrome (FS4) Tips for Teachers

• Learn as much as possible about • If you’re not part of the student’s Down sydrome. The organiza- IEP team, ask for a copy of this tions mentioned in this fact important document. The student’s sheet can help you identify educational goals will be listed techniques and specific strate- there, as will the services and accom- gies to support the student’s modations that he or she is sup- learning. We’ve included some posed to receive, including in your additional suggestions below. class.

• This may seem obvious, but sometimes the • Talk to specialists in your school (for appearance of Down syndrome can give example, special educators), as necessary. the mistaken impression that the child They can help you identify methods that cannot learn. Focus on the individual child are effective for teaching a student with and learn firsthand what needs and capa- disabilities, ways to adapt the curriculum, bilities he or she has. and how to address the student’s IEP goals in the classroom. • Realize that you can make a big difference in this student’s life! Use the student’s • Be as concrete as possible with the student. abilities and interests to involve and Demonstrate what you want to see happen motivate. Give lots of opportunities for the instead of giving only verbal instructions. student to be successful. When you share concrete information verbally, also show a photograph. Give the • Talk candidly with your student’s parents. student practical materials and experiences They’re experts and can tell you a great deal and the opportunity to touch and examine about their daughter’s or son’s special objects. needs and abilities. • Divide new tasks and large tasks into • Work with the student’s parents and other smaller steps. Demonstrate the steps. Have school personnel to develop and imple- the student do the steps, one by one. Offer ment a special educational plan (IEP) that help when necessary. addresses the individual needs of the student. Share information on a regular • Give the student immediate, concrete basis with parents about how things are feedback. going for the student at home and in school.

FS4—June 2010

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

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

NICHCY Disability Fact Sheet #6 Jeremy’s Story June 2010

When Jeremy was 4 months old, with thousands of Seizures can last from a few he had his first others to raise seconds to a few minutes. They seizure. His mother funds for research, can have different symptoms, Caroline knew at education, advocacy, too, from convulsions and loss once that something and services for of consciousness, to signs such was wrong, because people with epilepsy as blank staring, lip smacking, she’d never seen him and their caregivers. or jerking movements of arms so stiff and pale, with The best part of the day for and legs.2 his eyes rolling back. Jeremy and Caroline was Some people can have a The seizure passed quickly, meeting so many other people seizure and yet not have epi- although, to Caroline, it who live with epilepsy every lepsy. For example, many young seemed to last forever. Then day, just like they do them- children have convulsions from Jeremy took a deep breath, selves. fevers. Other types of seizures opened his eyes, and looked at not classified as epilepsy inher. Soon afterward, the baby Definition clude those caused by an fell into a deep sleep. Epilepsy is a seizure disorder. imbalance of body fluids or That was 15 years ago. According to the Epilepsy chemicals or by alcohol or drug Jeremy’s a teenager now, and Foundation of America, a withdrawal. Thus, a single you wouldn’t guess from his seizure happens when a brief, seizure does not mean that the alert eyes, quick smile, or quirky strong surge of electrical activity person has epilepsy. Generally 1 sense of humor that his brain is affects part or all of the brain. speaking, the diagnosis of subject sometimes to brief, epilepsy is made when a person strong surges of electrical has two or more unprovoked activity that dramatically affect seizures.3 his cognition and physical functioning. It’s taken a lot of Incidence doctor visits, different medica- is the About three million Ameri- tions, and one brain surgery to National Dissemination Center cans have epilepsy. Of the get his epilepsy under control. for Children with Disabilities. 200,000 new cases diagnosed He still has seizures, but they each year, nearly 45,000 are don’t happen very often now, NICHCY children and adolescents.4 much to everyone’s relief, 1825 Connecticut Avenue N.W. especially his mom and dad. Washington, DC 20009 Epilepsy affects people in all nations and of all races. Its This year, for the first time, 1.800.695.0285 (Voice / TTY) incidence is greater in African Jeremy and Caroline took part 202.884.8200 (Voice / TTY) American and socially disadvan- in the National Walk for [email protected] taged populations.5 Epilepsy, where they joined http://nichcy.org

Disability Fact Sheet #6 (FS6) Characteristics ing a shirt. Such behavior, however, is unconscious, may Although the symptoms be repetitive, and is usually not listed below do not necessarily remembered afterwards. mean that a person has epilepsy, it is wise to consult a Diagnosis doctor if you or a member of your family experiences one or Diagnosing epilepsy is a more of them: multi-step process. According to the Epilepsy Foundation of • “Blackouts” or periods of America: confused memory; ...the doctor’s main • Episodes of staring or tool...is a careful unexplained periods of and then deep sleep. The person medical history with as unresponsiveness; will not remember what much information as happened during the seizure. possible about what the • Involuntary movement of seizures looked like and You may also have heard of arms and legs; what happened just the petit mal seizure, which is before they began. The • “Fainting spells” with an older term for another type doctor will also perform incontinence or followed by of generalized seizure. It’s now a thorough physical excessive fatigue; or called an absence seizure, examination, especially because during the seizure, the • Odd sounds, distorted of the nervous system, as person stares blankly off into perceptions, or episodic well as analysis of blood space and doesn’t seem to be feelings of fear that cannot and other bodily fluids.7 aware of his or her surround- be explained. ings. The person may also blink The doctor may also order Doctors have described rapidly and seem to chew. an electroencephalograph more than 30 different types of Absence seizures typically last (EEG) of the patient’s brain seizures.6 These are divided into from 2-15 seconds and may not activity, which may show two major categories—general- be noticed by others. After- patterns that help the doctor ized seizures and partial sei- wards, the person will resume decide whether or not someone zures (also known as focal whatever he or she was doing at has epilepsy. Other tests may seizures). the time of the seizure, without also be used—such as the CT any memory of the event. (computerized tomography) or Generalized Seizures MRI (magnetic resonance Partial Seizures This type of seizure involves imaging)—in order to look for Partial seizures are so named both sides of the brain from any growths, scars, or other because they involve only one the beginning of the seizure. physical conditions in the brain hemisphere of the brain. They The best known subtype of that may be causing the sei- may be simple partial seizures generalized seizures is the zures. Which tests and how (in which the person jerks and grand mal seizure. In a grand many of them are ordered may may have odd sensations and mal seizure, the person’s arms vary, depending on how much perceptions, but doesn’t lose and legs stiffen (the tonic each test reveals.8 phase), and then begin to jerk consciousness) or complex (the clonic phase). That’s why partial seizures (in which Treatment the grand mal seizure is also consciousness is impaired or known as a generalized tonic lost). Complex partial seizures Anti-epileptic medication is clonic seizure. often involve periods of “auto- the most common treatment for matic behavior” and altered epilepsy. It’s effective in stop- Grand mal seizures typically consciousness. This is typified ping seizures in 70% of pa- last 1-2 minutes and are fol- by purposeful-looking behavior, tients.9 lowed by a period of confusion such as buttoning or unbutton-

NICHCY: http://nichcy.org 2 Epilepsy (FS6) Interestingly, it’s not Educational and To access early intervention uncommon for doctors to wait Developmental Considerations services for a child up to his or a while before prescribing an her 3rd birthday, consult anti-seizure medication, It’s not unusual for seizures NICHCY’s State Resource Sheet especially if the patient is a to interfere with a child’s for your state (available online young child. Unless the EEG of development and learning. For at: http://nichcy.org/state- the patient’s brain is clearly example, if a student has the organization-search-by-state). abnormal, doctors may suggest type of seizure characterized by You’ll find the listing for early waiting until a second or even periods of fixed staring, he or intervention under the first third seizure occurs. Why? she is likely to miss parts of section, State Agencies. The Because studies show that an what the teacher is saying. If agency listed there will be able otherwise normal child who has teachers—or other caregivers to put you in contact with the had a single seizure has a such as babysitters, daycare early intervention program in relatively low (15%) risk of a providers, preschool teachers, K- your community. second one.10 12 personnel—observe such an To access special education episode, it’s important that they When anti-epileptic medi- services for a school-aged child, document and report it cations are not effective in get in touch with your local promptly to parents (and the stopping a person’s seizures, public school system. Calling school nurse, if appropriate). other treatment options may be the elementary school in your discussed. These include: Because epilepsy can affect a neighborhood is an excellent child’s learning and develop- place to start. • surgery to remove the areas ment (even babies), families of the brain that are produc- will want to learn more about More about ing the seizures; the systems of help that are Services under IDEA • stimulation of the vagus available. Much of that help The process of finding a nerve (a large nerve in the comes from the nation’s special child eligible for early interven- neck), where short bursts of education law, the Individuals tion or special education and electrical energy are directed with Disabilities Education Act related services under IDEA into the brain via the vagus (IDEA), which makes available begins with a comprehensive nerve; and these two sets of services: and individual evaluation of the • a ketogenic diet (one that is • Early intervention | A child in order to: very high in fats and low in system of services to help • establish carbohydrates), which infants and toddlers with that the makes the body burn fat for disabilities (before their 3rd child does, energy instead of glucose. birthday) and their families. indeed, have According to the Epilepsy • Special education and a disability; Foundation of America, 10% of related services | Services • get a detailed new patients cannot bring their available through the public picture of how seizures disorder under control school system for school- the disability despite optimal medical managed children, including affects the child agement.11 preschoolers (ages 3-21). functionally, In both of these systems, developmentally, eligible children receive special and academically; and services designed to address the developmental, functional, and • document the child’s special educational needs resulting needs related to the disabil- from their disability. ity.

NICHCY: http://nichcy.org 3 Epilepsy (FS6) This evaluation is provided life of a child with epilepsy, free of charge through either because it details the nature of the early intervention system the child’s needs and the (for infants and toddlers under services that the public school the age of 3) or through the system will provide free of local school system (for chil- charge to address those needs. dren ages 3-21). Under IDEA, children with epilepsy are Succeeding at School usually found eligible for Special education and services under the category of the unique needs of the family, related services can be very “Other Health Impairment” so that parents and other family helpful to children with epi- (OHI). We’ve included IDEA’s members will know how to lepsy attending public school. definition of OHI in the box help their young child with Because the disorder affects below. epilepsy. Early intervention services may be provided on a memory and concentration, When a baby or toddler is sliding-fee basis, meaning that accommodations in the class- found eligible for early interven- the costs to the family will room and during testing are key tion, parents meet with the depend upon their income. to students’ academic success. early intervention staff, and Some common accommoda- together they develop what is When a child is found tions and services provided to known as an Individualized eligible for special education students with epilepsy are listed Family Service Plan, or IFSP. and related services, school staff in the box on the next page. The IFSP will describe the and parents meet and develop Related services may be child’s unique needs as well as what is known as an Individu- every bit as important for the services the child will alized Education Program, or children with epilepsy, receive to address those needs. IEP. This document is very especially school health services The IFSP will also emphasize important in the educational and school nurse services—which can provide the child’s medication during school hours or give IDEA’s Definition of “Other Health Impairment” first aid instruction on seizure management to the student’s The nation’s special education law specifically mentions epilepsy teachers, for example. in its definition of “Other Health Impairment,” a category under which children may be found eligible for special education and Depending on the child’s related services. Here’s IDEA’s definition. unique needs, other related services may also be necessary (9) Other health impairment means having limited so that the student benefits strength, vitality, or alertness, including a heightened from his or her special educa- alertness to environmental stimuli, that results in limited tion program—for example, alertness with respect to the educational environment, counseling services. Children that— and youth with epilepsy must deal with the psychological and (i) Is due to chronic or acute health problems such social aspects of the condition. as asthma, attention deficit disorder or attention deficit These include public hyperactivity disorder, diabetes, epilepsy, a heart condi- misperceptions and fear of tion, hemophilia, lead poisoning, leukemia, nephritis, seizures, loss of self-control rheumatic fever, sickle cell anemia, and Tourette syn- during the seizure episode, and drome; and compliance with medications. (ii) Adversely affects a child's educational perfor- Counseling services may help mance. 34 CFR §300.8(c)(9) students with epilepsy address the complexities of living with this disorder. The school can

NICHCY: http://nichcy.org 4 Epilepsy (FS6) Accommodations in the Classroom

The accommodations that a child with epilepsy receives are determined by his or her IEP team (which includes the parents). Here are some possibilities to consider.12

To address memory deficits To address health concerns • Provide written or pictorial • Be flexible about time also help by providing epilepsy instructions missed from school to education programs for staff seek treatment or adjust • Use voice recordings of to new medications and students, including infor- verbal instructions mation on how to recognize a • Provide extra time for seizure and what to do if a • Have a peer buddy take assignments and a seizure occurs. notes for the student or modified workload permit tape recording It is important that the (fatigue is a common side teachers and school staff are • Divide large tasks into effect of seizures and informed about the child’s smaller steps medications) condition, possible effects of • Replace fluorescent medication, and what to do in • Provide a checklist of assignments and a calendar lighting with full spec- case a seizure occurs at school. trum lighting Most parents find that a friendly with due dates conversation with the teacher(s) • Decrease memory demands • Provide private area to at the beginning of the school during classwork and rest or recover from a year is the best way to handle testing (e.g., use recognition seizure the situation. Even if a child has rather than recall tasks) seizures that are largely con- trolled by medication, it is still best to notify the school staff about the condition. References

1 School personnel and the Epilepsy Foundation of America. (n.d.). What is epilepsy? Available family should work together to online at: http://www.epilepsyfoundation.org/about/ monitor the effectiveness of 2 Ibid. medication as well as any side effects. If a child’s physical or 3 National Institute of Neurological Disorders and Stroke. (2010, May). intellectual skills seem to NINDS epilepsy information page. Available online at: http:// change, it is important to tell www.ninds.nih.gov/disorders/epilepsy/epilepsy.htm the doctor. There may also be 4 Epilepsy Foundation of America. (n.d.). Epilepsy and seizure statistics. hearing or perception problems Available online at: www.epilepsyfoundation.org/about/statistics.cfm caused by changes in the brain. Written observations of both 5 Ibid. the family and school staff will 6 National Institute of Neurological Disorders and Stroke. (2010, be helpful in discussions with May). Seizures and epilepsy: Hope through research. Available online at: the child’s doctor. http://www.ninds.nih.gov/disorders/epilepsy/detail_epilepsy.htm 7 Epilepsy Foundation of America. (n.d.). Epilepsy and seizure statistics. Available online at: http://www.epilepsyfoundation.org/about/diagnosis/

NICHCY: http://nichcy.org 5 Epilepsy (FS6) 8 Ibid. 11 Epilepsy Foundation of America. (n.d.). Epilepsy and seizure statistics. Available online at: 9 Epilepsy Foundation of America. (n.d.). Epilepsy www.epilepsyfoundation.org/about/statistics.cfm and seizure statistics. Available online at: www.epilepsyfoundation.org/about/statistics.cfm 12 Kitchen, S.G. (2010). Accommodation and compliance series: Employees with epilepsy. Available online `0 Epilepsy Foundation of America. (n.d.). The at the Job Accommodations Network website: decision to treat. Available online at: http:// http://askjan.org/media/epilepsy.html www.epilepsyfoundation.org/about/treatment/

Resources of More Information

Epilepsy Foundation of America | Your premier The Epilepsy Health Center | The Epilepsy Health source of information and guidance on epilepsy, Center at webmd.com has detailed, medically including state and local chapters and support based information to offer on the subject. groups. http://www.webmd.com/epilepsy/default.htm • English | www.epilepsyfoundation.org/ For Families 1.800.332.1000 Epilepsy Foundation eCommunities | Over 10,000 • Spanish | www.epilepsyfoundation.org/ members. | http://epilepsyfoundation.ning.com/ epilepsia/ 1.866.748.8008 Parent to Parent | Talk with other parents affected by epilepsy through the Parent to Parent Program epilepsy.com | A website of the Epilepsy Therapy in your state. | http://www.p2pusa.org/ Project, a leading source of support for transla- tional research and new therapy projects. A wealth Parent Training and Information Center | Have of information is available for families and profes- questions about early intervention or special sionals, at: http://www.epilepsy.com/ education? Want to know local and state resources? Find your state’s PTI for a wealth of information National Institute of Neurological Disorders and just for parents. | www.parentcenternetwork.org/ Stroke (NINDS) | Find detailed medical informa- parentcenterlisting.html tion on epilepsy, including research, clinical trials being conducted at NIH, helpful organizations, On Education and a long list of related publications. Teaching Students with Epilepsy: Strategies for 1.800.352.9424 | http://www.ninds.nih.gov/ Educators | http://www2.massgeneral.org/ disorders/epilepsy/epilepsy.htm childhoodepilepsy/pdf/strategies_for_educators.pdf

Talk About It! | A website dedicated to ending the How to Teach Young Students With Seizures | stigma associated with epilepsy through “talking http://www.ehow.com/how_7714685_teach-young- about it.” Lots of info here! students-seizures.html http://www.talkaboutit.org/flash.shtml Education of Kids with Epilepsy | http:// www.epilepsy.com/info/family_kids_education

NICHCY: http://nichcy.org 6 Epilepsy (FS6) Intellectual Disabilities

NICHCY Disability Fact Sheet #8 January 2011

Matthew’s Story Having an intellectual disabil- What Causes an ity makes it harder for Matt to Intellectual Disability? Matt is 15 years old. Because learn new things. He needs things Matt has an intellectual disabil- to be very concrete. But he’s Doctors have found many ity, he has been receiving special determined. He wants to work causes of intellectual disabilities. education services since elemen- outside, maybe in the park service The most common are: tary school. These services have or in a greenhouse, and he’s helped him tremendously, getting ready! • Genetic conditions. Sometimes because they are designed to fit an intellectual disability is his special learning needs. What are an caused by abnormal genes inherited from parents, errors Last year he started high Intellectual Disability? when genes combine, or other school. He, his family, and the reasons. Examples of genetic Intellectual disability is a term school took a good hard look at conditions are Down syn- used when a person has certain what he wants to do when drome, fragile X syndrome, limitations in mental functioning secondary school is over. Does and phenylketonuria (PKU). he want more education? A job? and in skills such as communicat- Does he have the skills he needs ing, taking care of him or herself, • Problems during pregnancy. An to live on his own? and social skills. These limitations intellectual disability can will cause a child to learn and result when the baby does not Answering these questions develop more slowly than a has helped Matt and the school typical child. plan for the future. He’s always been interested in the outdoors, Children with intellectual in plants, and especially in trees. disabilities (sometimes called He knows all the tree names and cognitive disabilities or mental can recognize them by their retardation) may take longer to is the leaves and bark. So this year he’s learn to speak, walk, and take care National Dissemination Center learning about jobs like forestry, of their personal needs such as for Children with Disabilities. landscaping, and grounds dressing or eating. They are likely maintenance. Next year he hopes to have trouble learning in NICHCY to get a part-time job. He’s school. They will learn, but it will 1825 Connecticut Avenue N.W. learning to use public transporta- take them longer. There may be Washington, DC 20009 tion, so he’ll be able to get to some things they cannot learn. 1.800.695.0285 (Voice / TTY) and from the job. 202.884.8200 (Voice / TTY) [email protected] http://nichcy.org

Disability Fact Sheet #8 (FS8) disabilities. However, most • have trouble solving prob- children with an intellectual lems, and/or disability can learn to do many things. It just takes them more • have trouble thinking time and effort than other logically. children. How are Intellectual How Common are Disabilities Diagnosed? Intellectual Disabilities? Intellectual disabilities are Intellectual disability is the diagnosed by looking at two most common developmental main things. These are: 1 disability. Approximately 6.5 • the ability of a person’s brain million people in the United to learn, think, solve prob- States have an intellectual lems, and make sense of the 2 disability. More than 545,000 world (called IQ or intellectual develop inside the mother children (ages 6-21) have some functioning); and properly. For example, there level of intellectual disability and may be a problem with the receive special education services • whether the person has the way the baby’s cells divide as in public school under this skills he or she needs to live it grows. A woman who category in IDEA, the nation’s independently (called adaptive drinks alcohol or gets an special education law.3 In fact, 1 behavior, or adaptive function- infection like rubella during in every 10 children who need ing). pregnancy may also have a special education have some 4 Intellectual functioning, or baby with an intellectual form of intellectual disability. IQ, is usually measured by a test disability. What are the Signs of called an IQ test. The average • Problems at birth. If a baby has score is 100. People scoring problems during labor and Intellectual Disability? below 70 to 75 are thought to birth, such as not getting have an intellectual disability. To There are many signs of an enough oxygen, he or she may measure adaptive behavior, intellectual disability. For ex- have an intellectual disability. professionals look at what a ample, children with an intellec- child can do in comparison to • Health problems. Diseases like tual disability may: other children of his or her age. whooping cough, the measles, • sit up, crawl, or walk later Certain skills are important to or meningitis can cause than other children; adaptive behavior. These are: intellectual disabilities. They can also be caused by extreme • learn to talk later, or have • daily living skills, such as malnutrition (not eating trouble speaking, getting dressed, going to the right), not getting enough bathroom, and feeding one’s • find it hard to remember medical care, or by being self; things, exposed to poisons like lead • communication skills, such as or mercury. • not understand how to pay understanding what is said for things, An intellectual disability is and being able to answer; not a disease. You can’t catch an • have trouble understanding • social skills with peers, family intellectual disability from social rules, members, adults, and others. anyone. It’s also not a type of mental illness, like depression. • have trouble seeing the To diagnose an intellectual There is no cure for intellectual consequences of their actions, disability, professionals look at the person’s mental abilities (IQ) and his or her adaptive skills.

NICHCY: http://nichcy.org 2 Intellectual Disabilities (FS8) Both of these are highlighted in the definition of this disability in Definition of “Intellectual Disability” the box on this page. This under IDEA definition comes from the Individuals with Disabilities Until Rosa’s Law was signed into law by President Obama in Education Act (IDEA). IDEA is October 2010, IDEA used the term “mental retardation” instead the federal law that guides how of “intellectual disability.” Rosa’s Law changed the term to be early intervention and special used in future to “intellectual disability.” The definition itself, education services are provided however, did not change. Accordingly, “intellectual disability” is to infants, toddlers, children, and defined as... youth with disbilities. “...significantly subaverage general intellectual functioning, Providing services to help existing concurrently with deficits in adaptive behavior and individuals with intellectual manifested during the developmental period, that adversely disabilities has led to a new affects a child’s educational performance.” understanding of how we define the term. After the initial diagno- [34 CFR §300.8(c)(6)] sis is made, we look at a person’s strengths and weaknesses. We also look at how much support Services Plan, or IFSP. The IFSP http://nichcy.org/babies/over- or help the person needs to get will describe the child’s unique view/ along at home, in school, and in needs as well as the services he or the community. This approach she will receive to address those Help for gives a realistic picture of each needs. The IFSP will also empha- individual. It also recognizes that size the unique needs of the School-Aged Children the “picture” can change. As the family, so that parents and other Just as IDEA requires that person grows and learns, his or family members will know how early intervention be made her ability to get along in the to help their young child with available to babies and toddlers world grows as well. intellectual disability. Early with disabilities, it requires that intervention services may be special education and related provided on a sliding-fee basis, Help for services be made available free meaning that the costs to the Babies and Toddlers of charge to every eligible child family will depend upon their with a disability, including income. When a baby is born with an preschoolers (ages 3-21). These intellectual disability, his or her To access early intervention services are specially designed to parents should know that there’s services in your area, consult address the child’s individual a lot of help available—and NICHCY’s State Resource Sheet for needs associated with the dis- immediately. Shortly after the your state. It’s available online at: ability—in this case, an intellec- diagnosis of ID is confirmed, http://nichcy.org/state-organiza- tual disability. parents will want to get in touch tion-search-by-state with the early intervention School staff will work with system in their community. We’ll There, you’ll find a listing for the child’s parents to develop an tell you how in a moment. early intervention under the first Individualized Education Program, section, State Agencies. The or IEP. The IEP is similar to an Early intervention is a system agency listed will be able to put IFSP. It describes the child’s of services designed to help you in contact with the early unique needs and the services infants and toddlers with dis- intervention program in your that have been designed to meet abilities (until their 3rd birthday) community. those needs. Special education and their families. It’s mandated and related services are provided by IDEA. Staff work with the To learn more about early at no cost to parents. child’s family to develop what is intervention, including how to known as an Individualized Family write the IFSP, visit NICHCY at:

NICHCY: http://nichcy.org 3 Intellectual Disabilities (FS8) does not permit a student to be Adaptive skills. Many chil- removed from education in age- dren with intellectual disabilities appropriate general education need help with adaptive skills, classrooms solely because he or which are skills needed to live, she needs modifications to be work, and play in the commu- made in the general education nity. Teachers and parents can curriculum. help a child work on these skills at both school and home. Some Supplementary aids and of these skills include: services. Given that intellectual disabilities affect learning, it’s • communicating with others; often crucial to provide supports to students with ID in the • taking care of personal needs (dressing, bathing, going to To access special education classroom. This includes making the bathroom); services for a school-aged child accommodations appropriate to in your area, get in touch with the needs of the student. It also • health and safety; your local public school system. includes providing what IDEA Calling the elementary school in calls “supplementary aids and • home living (helping to set your neighborhood is an excel- services.” Supplementary aids the table, cleaning the house, lent place to start. and services are supports that or cooking dinner); may include instruction, person- There is a lot to know about nel, equipment, or other accom- • social skills (manners, know- the special education process, modations that enable children ing the rules of conversation, much of which you can learn at with disabilities to be educated getting along in a group, NICHCY, which offers a wide with nondisabled children to the playing a game); range of publications on the maximum extent appropriate. • reading, writing, and basic topic. Enter our special educa- math; and tion information at: Thus, for families and teach- http://nichcy.org/schoolage/ ers alike, it’s important to know • as they get older, skills that what changes and accommoda- will help them in the work- Educational tions are helpful to students with place. intellectual disabilities. These Considerations need to be discussed by the IEP Transition planning. It’s team and included in the IEP, if extremely important for families A child with an intellectual appropriate. and schools to begin planning disability can do well in school early for the student’s transition but is likely to need the individu- Some common changes that into the world of adulthood. alized help that’s available as help students with intellectual Because intellectual disability special education and related disabilities are listed in the “Tips affects how quickly and how well services. The level of help and for Teachers” box on the next an individual learns new infor- support that’s needed will page. The organizations listed in mation and skills, the sooner depend upon the degree of the Resource Section also offer a transition planning begins, the intellectual disability involved. great deal of information on more can be accomplished ways to help children with General education. It’s before the student leaves second- intellectual disabilities learn and ary school. important that students with succeed in school. And you can intellectual disabilities be in- also consult NICHCY, beginning IDEA requires that, at the volved in, and make progress in, online at: http://nichcy.org/ latest, transition planning for the general education curricu- schoolage/accommodations/ students with disabilities must lum. That’s the same curriculum begin no later than the first IEP that’s learned by those without to be in effect when they turn 16. disabilities. Be aware that IDEA The IEP teams of many students with intellectual disabilities feel

NICHCY: http://nichcy.org 4 Intellectual Disabilities (FS8) that it’s important for these students to begin earlier than that. And they do. Tips for Teachers

For more information, visit NICHCY’s Learn as much as you can about Transition pages, beginning at: http:// intellectual disability. The organiza- nichcy.org/schoolage/transitionadult/ tions listed on this page will help you identify techniques and strate- References gies to support the student educationally. We’ve also listed some 1 National Center on Birth Defects and strategies below. Developmental Disabilities. (2005). Intellec- tual disability. Available online at: Recognize that you can make an www.cdc.gov/ncbddd/dd/mr3.htm enormous difference in this student’s life! Find out what the student’s strengths and 2 The Arc. (2009). Introduction to intellectual disabili- interests are, and emphasize them. Create ties. Available online at: http://www.thearc.org/ opportunities for success. page.aspx?pid=2448 If you are not part of the student’s IEP team, 3 U.S. Department of Education. (2010). 29th ask for a copy of his or her IEP. The student’s annual report to Congress on the implementation of the educational goals will be listed there, as well Individuals with Disabilities Education Act, 2007 (Vol. as the services and classroom accommoda- 2). Washington, DC: Autor. Available online at: tions he or she is to receive. Talk to others in http://www2.ed.gov/about/reports/annual/osep/ your school (e.g., special educators), as index.html necessary. They can help you identify effective methods of teaching this student, ways to 4 Ibid. adapt the curriculum, and how to address the student’s IEP goals in your classroom. Organizations Be as concrete as possible. Demonstrate what The Arc of the United States you mean rather than giving verbal directions. 800.433.5255 | [email protected] | www.thearc.org Rather than just relating new information Find a local chapter near you: verbally, show a picture. And rather than just http://www.thearc.org/page.aspx?pid=2437 showing a picture, provide the student with hands-on materials and experiences and the American Association on Intellectual and opportunity to try things out. Developmental Disabilities 800.424.3688 | www.aaidd.org/ Break longer, new tasks into small steps. The AAIDD definition manual contains the world’s Demsonstrate the steps. Have the student do most current and authoritative information on the steps, one at a time. Provide assistance, as intellectual disability, including best practice necessary. guidelines on diagnosing and classifying intellectual disability and developing a system of supports Give the student immediate feedback. for people living with an intellectual disability. Teach the student life skills such as daily living, social skills, and occupational aware- Division on Autism and Developmental ness and exploration, as appropriate. Involve Disabilities (DADD) the student in group activities or clubs. This division of the Council for Exceptional Children offers many publications and journals for Work together with the student’s parents and professionals. http://daddcec.org/ other school personnel to create and implement an IEP tailored to meet the student’s needs. Regularly share information about how the student is doing at school and at home. “Tips for Parents” appears on the next page.

NICHCY: http://nichcy.org 5 Intellectual Disabilities (FS8) Tips for Parents take your child to the supermarket with ❑ Learn about intellectual disability. The you. Help him count out the money to more you know, the more you can pay for your groceries. Help him count help yourself and your child. See the the change. list of organizations on page 5. ❑ Find opportunities in your commu- ❑ Be patient, be hopeful. Your child, like nity for social activities, such as scouts, every child, has a whole lifetime to recreation center activities, sports, and learn and grow. so on. These will help your child build ❑ Encourage independence in your child. For social skills as well as to have fun. example, help your child learn daily care ❑ Talk to other parents whose children have skills, such as dressing, feeding him or an intellectual disability. Parents can share herself, using the bathroom, and grooming. practical advice and emotional support. ❑ Give your child chores. Keep her age, Visit NICHCY’s State-Specific Resources attention span, and abilities in mind. Break page and find a parent group near you. down jobs into smaller steps. For example, Look in the Disability-Specific section, if your child’s job is to set the table, first ask under “intellectual disabilities.” State her to get the right number of napkins. Sheets are online at: Then have her put one at each family http://nichcy.org/state-organization-search- member’s place at the table. Do the same by-state with the utensils, going one at a time. Tell ❑ Meet with the school and develop an her what to do, step by step, until the job is IEP to address your child’s needs. Keep in done. Demonstrate how to do the job. Help touch with your child’s teachers. Offer her when she needs assistance. support. Find out how you can support ❑ Give your child frequent feedback. Praise your child’s school learning at home. your child when he or she does well. Build ❑ Take pleasure in your beautiful one. He— your child’s abilities. she—is a treasure. Learn from your child, ❑ Find out what skills your child is learning too. Those with intellectual disabilities at school. Find ways for your child to apply have a special light within—let it shine. those skills at home. For example, if the teacher is going over a lesson about money,

FS8—January 2011

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

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

NICHCY Disability Fact Sheet #7 January 2011 Sara’s Story

When Sara was in the first school, she’ll keep learning and • dyslexia—which refers to grade, her teacher started doing well. difficulties in reading; teaching the students how to • dysgraphia—which refers to read. Sara’s parents were really What are difficulties in writing; and surprised when Sara had a lot of Learning Disabilities? trouble. She was bright and • dyscalcula—which refers to Learning disability is a eager, so they thought that difficulties in math. reading would come easily to general term that describes her. It didn’t. She couldn’t specific kinds of learning All of these are considered match the letters to their sounds problems. A learning disability learning disabilities. or combine the letters to create can cause a person to have Learning disabilities (LD) words. trouble learning and using certain skills. The skills most vary from person to person. Sara’s problems continued often affected are: reading, One person with LD may not into second grade. She still writing, listening, speaking, have the same kind of learning wasn’t reading, and she was reasoning, and doing math. problems as another person having trouble with writing, with LD. Sara, in our example too. The school asked Sara’s “Learning disabilities” is not above, has trouble with reading mom for permission to evaluate the only term used to describe and writing. Another person Sara to find out what was these difficulties. Others in- with LD may have problems causing her problems. Sara’s clude: with understanding math. Still mom gave permission for the another person may have evaluation. trouble in both of these areas, as well as with understanding The school conducted an what people are saying. evaluation and learned that Sara has a learning disability. She Researchers think that started getting special help in is the learning disabilities are caused school right away. National Dissemination Center by differences in how a person’s for Children with Disabilities. brain works and how it pro- Sara’s still getting that cesses information. Children special help. She works with a NICHCY with learning disabilities are not reading specialist and a resource “dumb” or “lazy.” In fact, they room teacher every day. She’s in 1825 Connecticut Avenue N.W. Washington, DC 20009 usually have average or above the fourth grade now, and she’s 1.800.695.0285 (Voice / TTY) average intelligence. Their made real progress! She is brains just process information working hard to bring her 202.884.8200 (Voice / TTY) [email protected] differently. reading and writing up to grade level. With help from the http://nichcy.org

Disability Fact Sheet #7 (FS7) There is no “cure” for • may have trouble organiz- learning disabilities. They are ing what he or she wants to life-long. However, children say or not be able to think with LD can be high achievers of the word he or she needs and can be taught ways to get for writing or conversation; around the learning disability. With the right help, children • may not follow the social with LD can and do learn rules of conversation, such successfully. as taking turns, and may stand too close to the How Common are listener; Learning Disabilities? When a child has a learning • may confuse math symbols and misread numbers; Very common! As many as disability, he or she: 1 out of every 5 people in the • may have trouble learning • may not be able to retell a United States has a learning the alphabet, rhyming story in order (what hap- disability. Almost 1 million words, or connecting letters pened first, second, third); children (ages 6 through 21) to their sounds; or have some form of a learning disability and receive special • may make many mistakes • may not know where to education in school. In fact, when reading aloud, and begin a task or how to go one-third of all children who repeat and pause often; on from there. receive special education have a learning disability (Twenty-Ninth • may not understand what If a child has unexpected Annual Report to Congress, U.S. he or she reads; problems learning to read, write, listen, speak, or do math, Department of Education, • may have real trouble with 2010). then teachers and parents may spelling; want to investigate more. The What Are the Signs of • may have very messy same is true if the child is a Learning Disability? handwriting or hold a struggling to do any one of pencil awkwardly; these skills. The child may need While there is no one “sign” to be evaluated to see if he or that a person has a learning • may struggle to express she has a learning disability. ideas in writing; disability, there are certain About the Evaluation Process clues. We’ve listed a few below. About the Evaluation Process • may learn language late and Most relate to elementary have a limited vocabulary; If you are concerned that school tasks, because learning your child may have a learning disabilities tend to be identified • may have trouble remem- disability, contact his or her in elementary school. This is bering the sounds that school and request that the because school focuses on the letters make or hearing school conduct an individual- very things that may be difficult slight differences between ized evaluation under IDEA (the for the child—reading, writing, words; nation’s special education law) math, listening, speaking, to see if, in fact, a learning • may have trouble under- reasoning.A child probably disability is causing your child standing jokes, comic strips, won’t show all of these signs, or difficulties in school. Visit and sarcasm; even most of them. However, if NICHCY’s website and read a child shows a number of these • may have trouble following more about the evaluation problems, then parents and the directions; process, beginning at: teacher should consider the http://nichcy.org/schoolage/ possibility that the child has a • may mispronounce words evaluation/ learning disability. or use a wrong word that sounds similar;

NICHCY: http://nichcy.org 2 Learning Disabilities (FS7) What if the School System IDEA’s Definition of LD However, in the 2004 reauthori- Declines to Evaluate zation of IDEA, how LD is Not surprisingly, the Your Child? determined has been expanded. Individuals with Disabilities IDEA now requires that states Education Act (IDEA) includes a If the school doesn’t think adopt criteria that: definition of “specific learning that your child’s learning disability.” We’ve presented this • must not require the use of a problems are caused by a in the box below. IDEA also lists severe discrepancy between learning disability, it may evaluation procedures that must intellectual ability and decline to evaluate your child. If be used at a minimum to achievement in determining this happens, there are specific identify and document that a whether a child has a actions you can take. These child has a specific learning specific learning disability; include: disability. These will now be • Contact your state’s Parent discussed in brief. Training and Information Center (PTI) for assistance. Additional Evaluation The PTI can offer you Procedures for LD guidance and support in what to do next. Find your Now for the confusing part! PTI by visiting: http:// The ways in which children are www.parentcenternetwork.org/ identified as having a learning parentcenterlisting.html disability have changed over the years. Until recently, the most • Consider having your child common approach was to use a evaluated by an independent “severe discrepancy” formula. evaluator. You may have to This referred to the gap, or pay for this evaluation, or discrepancy, between the child’s you can ask that the school intelligence or aptitude and his pay for it. To learn more or her actual performance. about independent evaluations, visit NICHCY at: http://nichcy.org/schoolage/ parental-rights/iee IDEA’s Definition of “Specific Learning Disability”

• Ask for mediation, or use one The nation’s special education law specifically defines the term of IDEA’s other dispute “specific learning disability,” as follows: resolution options. Parents have the right to disagree (10) Specific learning disability —(i) General. Specific learning with the school’s decision disability means a disorder in one or more of the basic not to evaluate their child psychological processes involved in understanding or in and be heard. To find out using language, spoken or written, that may manifest itself more about dispute resolu- in the imperfect ability to listen, think, speak, read, write, tion options, visit NICHCY spell, or to do mathematical calculations, including condi- at: http://nichcy.org/ tions such as perceptual disabilities, brain injury, minimal schoolage/disputes/ brain dysfunction, dyslexia, and developmental aphasia. overview (ii) Disorders not included. Specific learning disability does not include learning problems that are primarily the result of visual, hearing, or motor disabilities, of mental retardation, of emotional disturbance, or of environmental, cultural, or economic disadvantage.

34 CFR §300.8(c)(10)

NICHCY: http://nichcy.org 3 Learning Disabilities (FS7) • must permit local educa- Moving on, let us suppose tion systems (which allow the tional agencies (LEAs) to that the student has been student to “write” by talking to use a process based on the diagnosed with a specific the computer). To learn more child’s response to scien- learning disability. What next? about AT for students who have tific, research-based inter- learning disabilities, visit LD vention; and What About School? Online’s Technology section, at: http://www.ldonline.org/ Once a child is evaluated • may permit the use of other indepth/technology alternative research-based and found eligible for special procedures for determining education and related services, What About Home? whether a child has a school staff and parents meet specific learning disability. and develop what is known as A child with learning an Individualized Education disabilities may need help at Basically, what this means is Program, or IEP. This docu- home as well as in school. that, instead of using a severe ment is very important in the Some suggestions are given in discrepancy approach to deter- educational life of a child with under “Tips for Parents” (see mining LD, school systems may learning disabilities. It describes page 6) where you’ll find other provide the student with a the child’s needs and the relevant items listed, too. research-based intervention and services that the public school keep close track of the student’s system will provide free of Conclusion performance. Analyzing the charge to address those needs. Learning disabilities clearly student’s response to that Learn more about the IEP, what affect some of the key skills in intervention (RTI) may then be it includes, and how it is devel- life—reading, writing, doing considered by school districts in oped, at: math. Because many people the process of identifying that a http://nichcy.org/schoolage/iep child has a learning disability. have learning disabilities, there Supports or changes in the is a great deal of expertise and There are also other aspects classroom (called accommoda- support available. Take advan- required when evaluating tions) help most students with tage of the many organizations children for LD. These include LD. Common accommoda- focused on LD. Their materials observing the student in his or tions are listed in the “Tips for and their work are intended her learning environment Teachers” box on the next page. solely to help families, students, (including the regular education Accessible instructional materi- educators, and others under- setting) to document academic als (AIM) are among the most stand LD and address it in ways performance and behavior in helpful to students whose LD that have long-lasting impact. the areas of difficulty. affects their ability to read and process printed language. This entire fact sheet could Thanks to IDEA 2004, there are be devoted to what IDEA numerous places to turn now requires when children are for AIMs. We’ve listed one evaluated for a learning disabil- central source in “Resources ity. Instead, let us refer you to a Especially for Teachers” on the training module on the subject. next page. It’s quite detailed, but if you would like to know those Assistive technology can also details, read through Module 11 help many students work of NICHCY’s Building the Legacy around their learning disabili- curriculum on IDEA 2004. It’s ties. Assistive technology can available online, at: http:// range from “low-tech” equip- nichcy.org/laws/idea/legacy/ ment such as tape recorders to module11 “high-tech” tools such as reading machines (which read books aloud) and voice recogni-

NICHCY: http://nichcy.org 4 Learning Disabilities (FS7) Tips for Teachers • letting the student with listening difficulties borrow notes from a classmate or use Learn as much as you can about the different a tape recorder; and types of LD. The resources and organizations listed below can help you identify specific • letting the student with writing difficul- techniques and strategies to support the student ties use a computer with specialized educationally. software that spell checks, grammar checks, or recognizes speech. Seize the opportunity to make an enormous difference in this student’s life! Find out and Learn about the different testing modifica- emphasize what the student’s strengths and tions that can really help a student with LD interests are. Give the student positive feedback show what he or she has learned. and lots of opportunities for practice. Teach organizational skills, study skills, and Provide instruction and accommodations to learning strategies. These help all students address the student’s special needs. Examples: but are particularly helpful to those with LD.

• breaking tasks into smaller steps, and giving Work with the student’s parents to create an directions verbally and in writing; IEP tailored to meet the student’s needs.

• giving the student more time to finish Establish a positive working relationship with schoolwork or take tests; the student’s parents. Through regular communication, exchange information about the • letting the student with reading problems student’s progress at school. use instructional materials that are accessible to those with print disabilities;

Resources Especially for Teachers

LD Online | For Educators http://www.ldonline.org/educators

LD Online | Teaching and Instruction http://www.ldonline.org/indepth/teaching National Center for Learning Disabilities | Especially for Teachers http://www.ncld.org/at-school/especially-for-teachers TeachingLD | A service of the Division for Learning Disabilities (DLD) of the Council for Exceptional Children http://teachingld.org/

Learning Disabilities Association of America | For Teachers http://www.ldanatl.org/aboutld/teachers/index.asp

National Center for Accessible Instructional Materials | Find AIM in your state! http://aim.cast.org/

Reading Rockets | For Teachers http://www.readingrockets.org/audience/teachers

NICHCY: http://nichcy.org 5 Learning Disabilities (FS7) Tips for Parents in your area via NICHCY's State Resource Sheets. Go to the section entitled "Disability-Specific Learn about LD. The more you know, the more Agencies" and scroll down until you reach you can help yourself and your child. "learning disabilities." Praise your child when he or she does well. Meet with school personnel and help develop an Children with LD are often very good at a IEP to address your child’s needs. Plan what variety of things. Find out what your child really accommodations your child needs, and enjoys doing, such as dancing, playing don’t forget to talk about AIM or soccer, or working with computers. assistive technology! Give your child plenty of opportunities to pursue his or her Establish a positive working strengths and talents. relationship with your child’s teacher. Through regular com- Find out the ways your child munication, exchange informa- learns best. Does he or she learn tion about your child’s progress by hands-on practice, looking, or at home and at school. listening? Help your child learn through his or her areas of strength.

Let your son or daughter help with household Resources Especially for Parents chores. These can build self-confidence and LD Online | For Parents concrete skills. Keep instructions simple, break http://www.ldonline.org/parents down tasks into smaller steps, and reward your child’s efforts with praise. LD Online | Parenting and Family http://www.ldonline.org/indepth/parenting Make homework a priority. Read more about how to help your child be a success at home- National Center for Learning Disabilities | work in the resources listed below. In the Home http://www.ncld.org/in-the-home Pay attention to your child’s mental health (and your own!). Be open to counseling, which can Learning Disabilities Association help your child deal with frustration, feel better of America | For Parents about himself or herself, and learn more about http://www.ldanatl.org/aboutld/parents/ social skills. index.asp

Talk to other parents whose children have LD. Reading Rockets | For Parents Parents can share practical advice and emo- http://www.readingrockets.org/audience/ tional support. You can identify parent groups parents

NICHCY Disability Fact Sheet #7 January 2011

NICHCY: http://nichcy.org 6 Learning Disabilities (FS7) Other Health Impairment

A publication of NICHCY Disability Fact Sheet #15 March 2012

Introduction in limited alertness with What’s immediately clear respect to the educational from this definition is that there “Other Health Impairment” environment, that— are quite a few disabilities and is one of the 14 categories of disorders that fall under the disability listed in our nation’s (i) Is due to chronic or umbrella of “other health special education law, the acute health problems such impairment.” And those dis- Individuals with Disabilities as asthma, attention deficit abilities are very different from Education Act (IDEA). Under disorder or attention deficit one another. This makes it IDEA, a child who has an hyperactivity disorder, difficult for us to summarize “other health impairment” is diabetes, epilepsy, a heart “other health impairment” and likely to be eligible for special condition, hemophilia, lead connect you with more infor- services to help the child poisoning, leukemia, mation and guidance on the address his or her educational, nephritis, rheumatic fever, subject. developmental, and functional sickle cell anemia, and needs resulting from the dis- Tourette syndrome; and And that is why we will ability. break this discussion down into (ii) Adversely affects a brief looks at each of the dis- IDEA’s Definition child’s educational perfor- abilities listed. mance. [§300.8(c)(9)] of OHI We’d also like to point out that IDEA’s definition uses the Before we talk about how to phrase “such as…” That’s signifi- access those special services, cant. It means that the disabili- let’s look at how IDEA defines ties listed are not the only ones “other health impairment.” This that may be considered when a definition, in combination with child’s eligibility for special a state’s policies, is a very is the services under IDEA is decided. important factor in whether or National Dissemination Center A child with another health not a child is found eligible for for Children with Disabilities. impairment (one not listed in services. IDEA states that: NICHCY IDEA’s definition) may be Other health impairment 1825 Connecticut Avenue N.W. found eligible for special means having limited Washington, DC 20009 services and assistance. What’s strength, vitality, or alert- 1.800.695.0285 (Voice / TTY) central to all the disabilities ness, including a height- 202.884.8200 (Voice / TTY) falling under “Other Health ened alertness to environ- [email protected] Impairment” is that the child mental stimuli, that results http://nichcy.org must have:

Disability Fact Sheet #15 (FS15) • limited strength, vitality, or alertness due to The Specific Disabilities Mentioned chronic health problems; and in IDEA’s Definition of OHI • an educational performance that is negatively What are the characteristics of the different affected as a result. disabilities mentioned in IDEA’s definition of Special Help for Children Other Health Impairment? Let’s take a very brief look. Two systems of help are available immediately to help eligible children ADD and AH/HD. ADD stands for with OHI. These divide out by age, as attention deficit disorder. AD/HD follows: stands for attention-deficit/hyperactivity disorder. The only difference • Early intervention services are for between these two is whether the children under the age of 3. child has hyperactivity with the Known as Part C of IDEA, the attention disorder. Both ADD and early intervention program AD/HD can make it hard for a exists in every state and includes person to sit still, control behavior, free evaluation of the baby or and pay attention. These difficulties toddler to see what the problem usually begin before the person is 7 is. The child’s needs (and the years old, but may not be noticed family’s) are identified in the until the child is older. evaluation. The parents and early interven- tionists then write an individualized family For more information on ADD and AD/HD: service plan (IFSP) to address the child’s (and • Read NICHCY’s stand-alone fact sheet on the family’s) unique needs. disability, at http://nichcy.org/disability/ • Special education and related services are for specific/adhd/ children from 3 to 21, sometimes older. These • Visit Children and Adults with Attention Deficit services include specially designed instruction Disorder (CHADD) | www.chadd.org and a wide range of supports to address the student’s individual needs that result from his Diabetes is a disease in which the body does or her disability. Special education and related not produce or use insulin properly. Insulin is a services are available to eligible children, free of hormone our bodies use to convert sugar, starches, charge, through the public school system. This and other food into the energy we need. There are includes a comprehensive and individual 23.6 million children and adults in the United evaluation of the child to determine his or her States with diabetes. This is about 7.8% of the eligibility, unique needs, and the services and population. supports that are approrpriate to address those Symptoms of diabetes include: frequent urina- needs. tion, excessive thirst, extreme hunger, weight loss, If your child has a health impairment, espe- fatigue, irritability, and blurry vision. If your child cially one listed in IDEA, you will want to find out has these symptoms, see the doctor immediately all you can about these service systems. They can be and investigate the possibility of diabetes. incredibly helpful for your child. A lot of informa- For more information on diabetes in both tion is available on NICHCY’s website, and we English and Spanish, contact: encourage you to visit, read the summaries of early intervention and special education and related • American Diabetes Association (ADA) services, and use the active links to connect directly (800) 342-2383 | http://www.diabetes.org with those systems of help in your area. • National Diabetes Information Clearinghouse (800) 860–8747 | www.diabetes.niddk.nih.gov

NICHCY: http://nichcy.org 2 Other Health Impairment (FS15) Epilepsy. According to the Epilepsy Foundation Hemophilia is a rare, inherited disorder in of America, epilepsy is a physical condition that which your blood doesn’t clot properly. As a result, occurs when there is a sudden, brief change in how people with hemophilia may bleed after an injury the brain works. When brain cells are not working for a longer time than those without the disorder. properly, a person’s consciousness, movement, or It’s a myth that persons with hemophilia bleed to actions may be altered for a short time. These death from even minor injuries. In truth, the physical changes are called epileptic seizures. condition ranges mild to severe. Symptoms in- Epilepsy affects people in all nations and of clude: excessive bleeding, excessive bruising, easy all races. bleeding, nose bleeds, and abnormal men- strual bleeding. Bleeding can also be Symptoms include: “blackouts” or internal, especially in the knees, ankles, periods of confused memory; epi- and elbows. sodes of staring or unexplained unresponsiveness; involuntary With very few exceptions, this movement of arms and legs; fainting disorder usually occurs only in spells with incontinence or followed males. Each year, about 400 chil- by excessive fatigue; or odd sounds, dren are born with hemophilia. distorted perceptions, and feelings of Approximately 18,000 people in the fear that cannot be explained. U.S. have hemophilia. For information on epilepsy in For more information on hemo- English and Spanish: philia in English and Spanish, contact the National Hemophilia Foundation, at (800) • Read NICHCY’s stand-alone fact sheet on the 42-HANDI and www.hemophilia.org epilepsy, at http://nichcy.org/disability/specific/ epilepsy/ Lead poisoning. Lead can build up in the body over a period of months or years. Even a small • Visit the Epilepsy Foundation amount of lead in the body can cause serious http://www.epilepsyfoundation.org problems—hence, the term lead poisoning. Being Heart conditions. It is nearly impossible to give exposed to lead-based paint or paint dust is the a summary of heart conditions that may cause a most common avenue to lead poisoning. “chronic or acute health condition” as defined Children under the age of six are especially within IDEA. There are many resources, however, vulnerable, because their mental and physical that you can use to learn more about the specific abilities are still developing. Signs of lead poison- condition of concern or interest to you. We’ve ing are rather nonspecific, sometimes making listed several below to get you started. diagnosis more difficult. Symptoms include: • American Heart Association irritability, loss of appetite, weight loss, sluggish- (800)AHA-USA1 ness, abdominal pain, vomiting, constipation, http://www.americanheart.org unusual paleness from anemia, and learning difficulties. • National Heart, Lung, and Blood Institute http://www.nhlbi.nih.gov/health/public/heart/ For more information in English and Spanish index.htm on lead poisoning, contact the National Lead Information Center, at (800) 424-LEAD (5323) • Mayo Clinic | Look under Diseases and Condi- and www.epa.gov/lead/nlic.htm tions for comprehensive guides to hundreds of different conditions, not just those related to Leukemia. Normally, the bone marrow in our the heart. http://mayoclinic.com/ bodies produces white blood cells to defend against infections. Leukemia develops when the marrow produces too many white blood cells and what’s produced are abnormal. Leukemia is considered a cancer of the bone marrow and blood. There

NICHCY: http://nichcy.org 3 Other Health Impairment (FS15) are four types. According For more information in English and Spanish to the Leukemia & on your kidneys and nephritis, contact: Lymphoma Society , the most common type in • American Kidney Fund | (800) 638–8299 children under 19 years www.kidneyfund.org of age is Acute Lympho- • American Society of Pediatric Nephrology cytic Leukemia (ALL). www.aspneph.com Symptoms of ALL • National Kidney Foundation | (800) 622–9010 include: tiredness or no www.kidney.org energy, shortness of breath during physical Rheumatic fever can develop as a complication activity, pale skin, mild of untreated or poorly treated strep throat or scarlet fever or night sweats, slow fever. It’s not common in the United States, al- healing of cuts and excess though it is fairly common worldwide. Symptoms bleeding, black-and-blue marks include: fever; pain in one joint that moves to (bruises) for no clear reason, another joint; red, hot, or swollen joints; small, pinhead-size red spots under the skin, aches in painless nodules beneath the skin; rapid, fluttering, bones or joints (for example, knees, hips or shoul- or pounding heartbeats (palpitations); shortness of ders), and low white cell counts. A child showing breath; a painless rash with a ragged edge; jerky, any such symptoms should visit a healthcare uncontrollable body movements, most often in the professional for examination, to identify the cause. hands, feet, and face; and unusual behavior, such as crying or inappropriate laughing. For more information in English and Spanish on leukemia, contact the Leukemia & Lymphoma It’s very important to treat rheumatic fever, Society, at (800) 955-4572 and http://www.lls.org/ because it can cause permanent damage to the heart, especially the valves. Diagnosing the condi- Nephritis means that one or both of a person's tion usually involves a physical exam by the doctor, kidneys are inflamed. The kidneys are very impor- who will look for signs of tender or swollen joints, tant organs in the body, because they clean the the tell-tale rash, and abnormal heart rhythm. blood by filtering out excess water, salt, and waste Typically, the doctor will also do a blood test for products from the food we eat. Nephritis may be strep throat. Antibiotics are the usual treatment for due to infection, but it’s more commonly associ- rheumatic fever, to eliminate the strep bacteria ated with autoimmune disorders that affect the from the system. It’s not unusual for a person to major organs of the body. Individuals with lupus, take low-dose antibiotics continually for years for example, are at much higher risk for developing (especially the first 3 -5 years after the first episode) nephritis. to prevent rheumatic fever from coming back. You may also hear the term nephrotic syndrome For more information on rheumatic fever, read used. In itself, nephrotic syndrome is not a disease, the Mayo Clinics article, at: http:// but it may be the first signs of kidney disease that www.mayoclinic.com/health/rheumatic-fever/ makes it difficult for the body to produce urine. In DS00250 children, nephrotic syndrome is most common between the ages of 1½ and 5 years, and seems to Sickle cell anemia. Anemia, in general, is a affect boys more often than girls. Symptoms condition where an individual’s blood has less include: high levels protein in the blood or, para- than a normal number of red blood cells or the red doxically, low levels; swelling, when salt and water blood cells themselves don’t have enough hemo- build up in the tissues; less frequent urination; and globin (which carries oxygen throughout the weight gain from water retention. Diagnosing body). Sickle cell anemia is one type of anemia childhood nephrotic syndrome involves taking a where the hemoglobin is abnormal and the red urine sample to test for protein. blood cells often become shaped like the letter C, making them sickle-shaped (like a crescent). This

NICHCY: http://nichcy.org 4 Other Health Impairment (FS15) shape makes it hard for the red blood cells to pass Are children with Tourette syndrome automati- through small blood vessels, causing pain and cally eligible for special education and related damaging organs. services? The plain answer is: No. Eligibility will depend on several factors and a careful study of the Literally millions of people worldwide are evaluation results. As IDEA’s definition of OHI affected by sickle cell anemia. The disease is inher- indicates, the child’s educational performance must ited and primarily affects people of African descent. be adversely affected as a result of the syndrome. Symptoms include chronic anemia and periodic episodes of pain (in the arms, legs, chest, and Interestingly, Tourette syndrome was explic- abdomen). itly added to the OHI category in the 2004 Amendments to IDEA. According to the For more information on sickle cell U.S. Department of Education, the anemia, check out these resources: syndrome was specifically named in the • Sickle Cell Disease Association of definition of “other health impair- America, Inc. ment” because: (800) 421-8453 | http:// …Tourette syndrome is commonly www.sicklecelldisease.org/ misunderstood to be a behavioral or • SickleCellKids.org emotional condition, rather than a A fun, educational website for kids neurological condition. Therefore, with sickle cell anemnia. including Tourette syndrome in the http://www.sicklecellkids.org/ definition of other health impairment may help correct the misperception of • American Sickle Cell Anemia Tourette syndrome as a behavioral or Association conduct disorder and prevent the misdi- http://www.ascaa.org/ agnosis of their needs. (71 Fed. Reg. at • Información en español 46550) http://www.ascaa.org/espanol.php For more information on Tourette syndrome: Tourette syndrome is a disorder characterized by • National Tourette Syndrome Association tics (involuntary, rapid, sudden movements) and/ http://tsa-usa.org/ or vocal outbursts that occur repeatedly. The tics can range from simple (e.g., rapid eye-blinking, • Tourette Syndrome "Plus" facial grimacing, shoulder-shrugging) to complex http://www.tourettesyndrome.net/ (involving several muscle groups, such as hopping, • Información en español bending, or twisting). Vocalizations can also range http://tsa-usa.org/aTSA_Espanol/ from simple (throat-clearing, sniffing, grunting) to bienvenidos.html complex (involving words or phrases). Other Health Impairments Tourette syndrome is an inherited disorder that is first noticed in childhood, usually between the Not Mentioned in IDEA ages of 7 and 10. The syndrome occurs in boys four As we said earlier, there are other health impair- times more than in girls. It’s estimated that 2% of ments that can fall under the umbrella of IDEA’s the population has Tourette syndrome. This may be OHI category besides the ones specifically men- a conservative estimate, since many people with tioned in the law. The U.S. Department of Educa- very mild tics are unaware of them and never seek tion mentions specific other disorders or condi- medical attention. However, effective medications tions that may qualify a child for services under are available for those whose symptoms interfere IDEA, in combination with other factors—for with functioning. example: fetal alcohol syndrome (FAS), bipolar disorders, dysphagia, and other organic neurological disorders.

NICHCY: http://nichcy.org 5 Other Health Impairment (FS15) Why aren’t these other disorders medical practice, whole person specifically mentioned in IDEA’s orientation, coordinated care, regulations? According to the quality and safety, enhanced Department: access, and appropriate payment. ...because these conditions are commonly understood to be To find out more about this health impairments...The list approach to health care, and to of acute or chronic health connect with resources in your conditions in the definition of state, visit the website of the other health impairment is not National Center for Medical exhaustive, but rather provides Home Initiatives for Children examples of problems that children have with Special Needs. You’ll find the site full of that could make them eligible for special information and tools for health care providers and education and related services under the families, including a national medical home category of other health impairment. (71 training curriculum and links to medical home Fed. Reg. at 46550) projects and activities in every state. There are also materials in other languages for addressing health Note that the Department uses the phase care issues (Cambodian, Chinese, Korean, Laotian, “could make them eligible”—could, not does. Other Russian, Spanish, Vietnamese). Enter the site at: aspects (adversely affected educational perfor- http://www.medicalhomeinfo.org/ mance, a child’s evaluation results, state policies) are considered in determining eligibility for ser- Another resource you may find especially vices under IDEA, not solely the existence of the helpful in addressing the health care and medical disability or condition. issues associated with an OHI is Family Voices. Family Voices concerns itself proactively with the Addressing Medical Issues health care of children with special health care needs. Through a network of state chapters, Family- By their very nature, other health impairments to-Family Health Information Centers, and politi- involve medical care and medical cal advocacy, Family Voices offers tools and in- concerns. The amount of time that must be de- formed guidance to professionals and families voted to doctor visits, medical appointments, alike. Visit FV at: http://www.familyvoices.org/ hospitalization, and seeing to the child’s well-being will depend greatly on the nature and severity of Life at School the child’s health impairment. For many families, the actual medical care of their child can be a daily, Health impairments can affect a student’s weekly, monthly challenge. educational performance. In fact, for a child to qualify for special education services in the public How to deal with the medical side of things? schools under the category of OHI, the health This section of our OHI fact sheet will connect you impairment must affect the child’s educational with resources and wisdom within the health care performance. and parent communities both. When a child is found to be eligible for special The Concept of a Medical Home education, he or she will also be eligible to receive Recently, the term “medical home” has entered related services in school. Related services are the lexicon of health care. A medical home is not a provided as required to enable children with house, office, or hospital. It’s a team-partnership disabilities to benefit from their special education. approach to providing comprehensive primary Three related services in particular come to mind care. The principles of a medical home are well for children who have an OHI: stated by the American Academy of Pediatrics (2007): personal physician, physician-directed

NICHCY: http://nichcy.org 6 Other Health Impairment (FS15) • medical services, which are provided for diagnos- • conducting and/or promoting education and tic and evaluative purposes only, and which are skills training for all (including the child) who defined as “…services provided by a licensed serve as caregivers in the school setting. physician to determine a child’s medically related disability that results in the child’s need Determining what related services a child needs for special education and related services” [34 is the responsibility of the child’s IEP team, the CFR §300.34(c)(5)]; group that develops the child’s individualized education program. Key information will be • school health services and school nurse services, available from the evaluation process, since a child which are defined by IDEA as “…health ser- must be assessed in all areas related to his or her vices that are designed to enable a child with a suspected disability. The IEP team must look disability to receive FAPE as described in the carefully at the evaluation results, which show the child’s IEP. child's areas of strength and need, and decide which related services are appropriate for the child. School nurse services are services provided by a The school must then provide these services as part qualified school nurse. School health services are of the child’s education program. services that may be provided by either a qualified school nurse or other qualified person [34 CFR When Health Affects School Attendance §300.34(c)(13)]. Many children with disabilities, especially those who are medically fragile, could It’s not uncommon for a child with an OHI to not attend school without these supportive ser- be absent from school, sometimes even for long vices. Over the years, the number and type of the periods of time, especially if a hospitalization is health-related services provided in schools have necessary. During these times, the public school grown, as might be expected when you consider remains responsible for providing educational and medical advances in the last decade alone. States related services to the eligible child with OHI. and local school districts often have guidelines that Because IDEA specifically says that special educa- address school health services and school nurse tion can be provided in a range of settings, includ- services. These may include providing such health- ing the home or the hospital, states and school related support as: districts will have policies and approaches for addressing children’s individualized needs and • special feedings; circumstances. • clean intermittent catheterization; This makes the school the best source of information about local policies on making sure • suctioning; that services are provided to children with OHI • the management of a tracheostomy; who are home-bound or hospitalized. When the child is at home, the school may arrange for a • administering and/or dispensing medications; homebound instructor to bring assignments from • planning for the safety of a child in school; school to home and help the student complete those assignments. When the child • ensuring that care is given is hospitalized, services may while at school and at be provided by the hospital, school functions to pre- through arrangement with vent injury (e.g., changing the school, although this a child’s position fre- will vary according to local quently to prevent policies. (In any event, the pressure sores); hospital is likely to have policies and procedures of • chronic disease manage- its own, and it’s important ment; and for the family to find out what those are.) The hospital may want to review the

NICHCY: http://nichcy.org 7 Other Health Impairment (FS15) child’s IEP and may, with the parent’s permission, each of these types of transition. Here are several to modify it during the child’s hospitalization. Then, start, and they will likely lead you to more: after the child is discharged, the hospital will share a summary of the child’s progress with the school, • Transition issues. in keeping with whatever local school policies are. Medical Home Portal. http://www.medicalhomeportal.org/living- Planning for Transitions with-child/transition-issues

After a child has been out of school for an • Transitioning from pediatric to adult health care. extended period of time, it’s important for parents The Adolescent Health Transition Project. and school staff to plan carefully for his or her http://depts.washington.edu/healthtr/ return to school and the activities that go on there. • Transitions for youth with health care needs. Planning for a child’s transition isn’t just about Healthy & Ready to Work (HRTW) National when he or she returns to school, though. It needs Resource Center. to include moves from: http://www.hrtw.org/index.html • hospital to home Finding More Info • home to school In closing, we hope that this information is • school to school helpful to you. We encourage you to learn more through the many resources we’ve listed in this • hospital to school factsheet and by visiting our website. Every page on • school to work or our website has a SEARCH box in the upper right college corner. What OHI are you interested in? Type the name of that OHI into the SEARCH box, press the • pediatric to adult SEARCH button (alongside), and you’ll get a list of health care (Pola-Money, 2005). search results. Those results will connect you with That’s a tall order, isn’t it? Fortunately, there are products and organizations related to your OHI of numerous resources available that can help fami- interest. Good luck! lies, schools, and health care providers plan for

FS15—Updated March 2012

NICHCY: http://nichcy.org 8 Other Health Impairment (FS15) Speech & Language Impairments

NICHCY Disability Fact Sheet #11 January 2011

A Day in the Life Pearl one on one, using the same • Articulation | speech impair- of an SLP storybook. Pearl has a speech ments where the child pro- disorder, too, but hers is called duces sounds incorrectly (e.g., Christina is a speech-language dysarthria. It causes Pearl’s lisp, difficulty articulating pathologist. She works with speech to be slurred, very soft, certain sounds, such as “l” or children and adults who have breathy, and slow. Here, the “r”); impairments in their speech, cause is weak muscles of the tongue, lips, palate, and jaw. So • Fluency | speech impairments voice, or language skills. These where a child’s flow of speech impairments can take many that’s what Christina and Pearl work on—strengthening the is disrupted by sounds, forms, as her schedule today syllables, and words that are shows. muscles used to form sounds, words, and sentences, and repeated, prolonged, or First comes Robbie. He’s a improving Pearl’s articulation. avoided and where there may cutie pie in the first grade and be silent blocks or inappropri- has recently been diagnosed with One more student to see—4th ate inhalation, exhalation, or childhood apraxia of speech—or grader Mario, who has a stutter. phonation patterns; CAS. CAS is a speech disorder She’s helping Mario learn to slow down his speech and control his • Voice | speech impairments marked by choppy speech. where the child’s voice has an Robbie also talks in a monotone, breathing as he talks. Christina already sees improvement in his abnormal quality to its pitch, making odd pauses as he tries to resonance, or loudness; and form words. Sometimes she can fluency. see him struggle. It’s not that the Tomorrow she’ll go to a muscles of his tongue, lips, and different school, and meet with jaw are weak. The difficulty lies different students. But for today, in the brain and how it commu- her day is...Robbie, Pearl, and nicates to the muscles involved Mario. in producing speech. The is the muscles need to move in precise National Dissemination Center ways for speech to be intelligible. Definition for Children with Disabilities. And that’s what she and Robbie There are many kinds of are working on. NICHCY speech and language disorders 1825 Connecticut Avenue N.W. that can affect children. In this Next, Christina goes down the Washington, DC 20009 fact sheet, we’ll talk about four hall and meets with Pearl in her 1.800.695.0285 (Voice / TTY) major areas in which these third grade classroom. While the 202.884.8200 (Voice / TTY) impairments occur. These are the other students are reading in [email protected] areas of: small groups, she works with http://nichcy.org

Disability Fact Sheet #11 (FS11) • Language | language impairments where the child has Definition of “Speech or Language Impairment” problems expressing needs, under IDEA ideas, or information, and/or in understanding what others The Individuals with Disabilities Education Act, or IDEA, defines say.1 the term “speech or language impairment” as follows: These areas are reflected in “(11) Speech or language impairment means a communica- how “speech or language impair- tion disorder, such as stuttering, impaired articulation, a ment” is defined by the nation’s language impairment, or a voice impairment, that adversely special education law, the Indi- affects a child’s educational performance.” viduals with Disabilities Educa- tion Act (IDEA’s definition is [34 CFR §300.8(c)(11] given in the box to the right). IDEA is the law that makes early intervention services available to Having the child’s hearing the two is most reliably done by infants and toddlers with dis- checked is a critical first step. The a certified speech-language abilities, and special education child may not have a speech or pathologist such as Christina, the available to school-aged children language impairment at all but, SLP in our opening story. with disabilities. rather, a hearing impairment that is interfering with his or her Characteristics of Speech or Development of Speech development of language. Language Impairments and Language Skills It’s important to realize that a The characteristics of speech in Childhood language delay isn’t the same thing as a speech or language or language impairments will vary depending upon the type of Speech and language skills impairment. Language delay is a impairment involved. There may develop in childhood according very common developmental also be a combination of several to fairly well-defined milestones problem—in fact, the most problems. (see the box below). Parents and common, affecting 5-10% of children in preschool.2 With other caregivers may become When a child has an articula- language delay, children’s lan- concerned if a child’s language tion disorder, he or she has guage is developing in the seems noticeably behind (or difficulty making certain sounds. expected sequence, only at a different from) the language of These sounds may be left off, slower rate. In contrast, speech same-aged peers. This may added, changed, or distorted, and language disorder refers to motivate parents to investigate which makes it hard for people abnormal language develop- further and, eventually, to have to understand the child. the child evaluated by a profes- ment.3 Distinguishing between sional. Leaving out or changing certain sounds is common when young children are learning to More on the Milestones of Language Development talk, of course. A good example of this is saying “wabbit” for What are the milestones of typical speech-language development? “rabbit.” The incorrect articula- What level of communication skill does a typical 8-month-old tion isn’t necessarily a cause for baby have, or a 18-month-old, or a child who’s just celebrated his concern unless it continues past or her fourth birthday? the age where children are You’ll find these expertly described in How Does Your Child Hear and expected to produce such sounds 4 Talk?, a series of resource pages available online at the American correctly. (ASHA’s milestone Speech-Language-Hearing Association (ASHA): resource pages, mentioned above, are useful here.) http://www.asha.org/public/speech/development/chart.htm

NICHCY: 1.800.695.0285 2 Speech-Language Impairments (FS11) Fluency refers to the flow of public schools in the 2005-2006 speech. A fluency disorder school year, more than 1.1 means that something is disrupt- million were served under the ing the rhythmic and forward category of speech or language flow of speech—usually, a stutter. impairment.11 As a result, the child’s speech contains an “abnormal number This estimate does not in- of repetitions, hesitations, clude children who have speech/ prolongations, or disturbances. language problems secondary to Tension may also be seen in the • improper use of words and other conditions such as deaf- face, neck, shoulders, or fists.”5 their meanings, ness, intellectual disability, autism, or cerebral palsy. Because Voice is the sound that’s • inability to express ideas, many disabilities do impact the produced when air from the individual’s ability to communi- • inappropriate grammatical lungs pushes through the voice cate, the actual incidence of patterns, box in the throat (also called the children with speech-language larnyx), making the vocal folds • reduced vocabulary, and impairment is undoubtedly within vibrate. From there, the much higher. sound generated travels up • inability to follow directions.10 through the spaces of the throat, Children may hear or see a Finding Help nose, and mouth, and emerges as word but not be able to under- our “voice.” A voice disorder Because all communication stand its meaning. They may involves problems with the disorders carry the potential to have trouble getting others to pitch, loudness, resonance, or isolate individuals from their understand what they are trying quality of the voice.6 The voice social and educational surround- to communicate. These symp- may be hoarse, raspy, or harsh. ings, it is essential to provide toms can easily be mistaken for For some, it may sound quite help and support as soon as a other disabilities such as autism nasal; others might seem as if problem is identified. While or learning disabilities, so it’s they are “stuffed up.” People many speech and language very important to ensure that the with voice problems often notice patterns can be called “baby child receives a thorough changes in pitch, loss of voice, talk” and are part of children’s evaluation by a certified speech- loss of endurance, and some- normal development, they can language pathologist. times a sharp or dull pain become problems if they are not associated with voice use.7 outgrown as expected. What Causes Speech and Language has to do with Language Disorders? Therefore, it’s important to meanings, rather than sounds.8 take action if you suspect that A language disorder refers to an Some causes of speech and your child has a speech or impaired ability to understand language disorders include language impairment (or other 9 and/or use words in context. A hearing loss, neurological disability or delay). The next two child may have an expressive disorders, brain injury, intellec- sections in this fact sheet will tell language disorder (difficulty in tual disabilities, drug abuse, you how to find this help. expressing ideas or needs), a physical impairments such as receptive language disorder cleft lip or palate, and vocal Help for (difficulty in understanding what abuse or misuse. Frequently, Babies and Toddlers others are saying), or a mixed however, the cause is unknown. language disorder (which in- Since we begin learning volves both). Incidence communication skills in infancy, Some characteristics of it’s not surprising that parents language disorders include: Of the 6.1 million children are often the first to notice—and with disabilities who received worry about—problems or special education under IDEA in delays in their child’s ability to

NICHCY: 1.800.695.0285 3 Speech-Language Impairments (FS11) communicate or understand. There, you’ll find a school staff will work Parents should know that there is listing for early interven- with his or her parents a lot of help available to address tion under the first to develop an Individu- concerns that their young child section, State Agen- alized Education Pro- may be delayed or impaired in cies. The agency gram, or IEP. The IEP is developing communication listed will be able to similar to an IFSP. It skills. Of particular note is the put you in contact describes the child’s the early intervention system with the early unique needs and the that’s available in every state. intervention services that have program in your been designed to Early intervention is a system community. meet those needs. of services designed to help Special education infants and toddlers with dis- To learn more and related services abilities (until their 3rd birthday) about early are provided at no and their families. It’s mandated intervention, cost to parents. by the IDEA. Through early including how to intervention, parents can have write the IFSP, visit NICHCY at: There is a lot to know about their young one evaluated free of http://nichcy.org/babies/ the special education process, charge, to identify developmen- overview/ much of which you can learn at tal delays or disabilities, NICHCY, which offers a wide including speech and language Help for range of publications on the impairments. topic. Enter our special educa- School-Aged Children tion information at: http:// If a child is found to have a nichcy.org/schoolage/ delay or disability, staff work Just as IDEA requires that with the child’s family to develop early intervention be made what is known as an Individual- available to babies and toddlers Educational Considerations ized Family Services Plan, or IFSP. with disabilities, it requires that Communication skills are at The IFSP will describe the child’s special education and related the heart of the education unique needs as well as the services be made available free experience. Eligible students with services he or she will receive to of charge to every eligible child speech or language impairments address those needs. The IFSP with a disability, including will want to take advantage of will also emphasize the unique preschoolers (ages 3-21). These special education and related needs of the family, so that services are specially designed to services that are available in parents and other family mem- address the child’s individual public schools. bers will know how to support needs associated with the dis- their young child’s needs. Early ability—in this case, a speech or The types of supports and intervention services may be language impairment. services provided can vary a great provided on a sliding-fee basis, Many children are identified deal from student to student, just meaning that the costs to the as having a speech or language as speech-language impairments family will depend upon their impairment after they enter the do. Special education and related income. public school system. A teacher services are planned and deliv- may notice difficulties in a ered based on each student’s To access early intervention child’s speech or communication individualized educational and services in your area skills and refer the child for developmental needs. Consult NICHCY’s evaluation. Parents may ask to Most, if not all, students with State Resource Sheet have their child evaluated. This a speech or language impairment for your state. evaluation is provided free by the will need speech-language ••••••• public school system. pathology services. This related http://nichcy.org/ If the child is found to have a service is defined by IDEA as state-organization-search-by- follows: state disability under IDEA—such as a speech-language impairment—

NICHCY: 1.800.695.0285 4 Speech-Language Impairments (FS11) (15) Speech-language either in the form of direct student would benefit from AT pathology services in- therapy or on a consultant basis. such as an electronic communi- cludes— cation system or other device. AT Assistive technology (AT) can is often the key that helps (i) Identification of also be very helpful to students, students engage in the give and children with speech or especially those whose physical take of shared thought, complete language impairments; conditions make communica- school work, and demonstrate tion difficult. Each student’s IEP their learning. (ii) Diagnosis and team will need to consider if the appraisal of specific speech or language impairments; References

(iii) Referral for medi- 1| Minnesota Department of Education. (2010). Speech or language impair- cal or other professional ments. Online at: http://education.state.mn.us/MDE/Learning_Support/ attention necessary for Special_Education/Categorical_Disability_Information/ the habilitation of speech Speech_or_Language_Impairments/index.html or language impairments; 2| Boyse, K. (2008). Speech and language delay and (iv) Provision of speech disorder. Retrieved from the University of Michigan and language services for Health System website: http://www.med.umich.edu/ the habilitation or pre- yourchild/topics/speech.htm vention of communica- 3| Ibid. tive impairments; and

(v) Counseling and guidance of parents, Tips for Teachers children, and teachers regarding speech and —Learn as much as you can about the student’s specific disability. language impairments. Speech-language impairments differ considerably from one another, [34 CFR §300.34(c)(15)] so it’s important to know the specific impairment and how it affects Thus, in addition to diagnos- the student’s communication abilities. ing the nature of a child’s —Recognize that you can make an enormous difference in this speech-language difficulties, student’s life! Find out what the student’s strengths and interests are, speech-language pathologists and emphasize them. Create opportunities for success. also provide: —If you are not part of the student’s IEP team, ask for a copy of his or • individual therapy for the her IEP. The student’s educational goals will be listed there, as well as child; the services and classroom accommodations he or she is to receive.

• consult with the child’s —Make sure that needed accommodations are provided for classwork, teacher about the most homework, and testing. These will help the student learn successfully. effective ways to facilitate the child’s communication in the —Consult with others (e.g., special educators, the SLP) who can help class setting; and you identify strategies for teaching and supporting this student, ways to adapt the curriculum, and how to address the student’s IEP goals in • work closely with the family your classroom. to develop goals and techniques for effective therapy in —Find out if your state or school district has materials or resources class and at home. available to help educators address the learning needs of children with speech or language impairments. It’s amazing how many do! Speech and/or language therapy may continue through- —Communicate with the student’s parents. Regularly share informa- out a student’s school years tion about how the student is doing at school and at home.

NICHCY: 1.800.695.0285 5 Speech-Language Impairments (FS11) Tips for Parents

—Learn the specifics of your child’s —Listen to your child. Don’t rush to speech or language impairment. The fill gaps or make corrections. more you know, the more you can help Conversely, don’t force your child to yourself and your child. speak. Be aware of the other ways in which communication takes place —Be patient. Your child, like every child, between people. has a whole lifetime to learn and grow. —Talk to other parents whose children —Meet with the school and develop an have a similar speech or language impair- IEP to address your child’s needs. Be your ment. Parents can share practical advice and child’s advocate. You know your son or emotional support. Visit NICHCY’s State daughter best, share what you know. Sheets and find a parent group near you. Look in the Disability-Specific section, under —Be well informed about the speech-language “speech-language.” State Sheets are online at: therapy your son or daughter is receiving. Talk http://nichcy.org/state-organization-search-by- with the SLP, find out how to augment and state enrich the therapy at home and in other environments. Also find out what not to do! —Keep in touch with your child’s teachers. Offer support. Demonstrate any assistive —Give your child chores. Chores build confi- technology your child uses and provide any dence and ability. Keep your child’s age, information teachers will need. Find out how attention span, and abilities in mind. Break you can augment your child’s school learning down jobs into smaller steps. Explain what to at home. do, step by step, until the job is done. Demon- strate. Provide help when it’s needed. Praise a job (or part of a job) well done.

4| American Speech-Language-Hearing Association. 9| Encyclopedia of Nursing & Allied Health. (n.d.). (n.d.). Speech sound disorders: Articulation and phonologi- Language disorders. Online at: http://www.enotes.com/ cal processes. Online at: http://www.asha.org/public/ nursing-encyclopedia/language-disorders speech/disorders/speechsounddisorders.htm 10| Ibid. 5| Cincinnati Children’s Hospital. (n.d.). Speech conditions and diagnoses. Online at: http:// 11 | U.S. Department of Education. (2010, December). www.cincinnatichildrens.org/health/info/speech/ Twenty-ninth annual report to Congress on the Implemen- diagnose/speech-disorder.htm tation of the Individuals with Disabilities Education Act: 2007. Online at: http://www2.ed.gov/about/reports/ 6| National Institute on Deafness and Other Commu- annual/osep/2007/parts-b-c/index.html nication Disorders. (2002). What is voice? What is speech? What is language? Online at: http:// www.nidcd.nih.gov/health/voice/whatis_vsl.htm

7| American Academy of Otolaryngology — Head and Neck Surgery. (n.d.). Fact sheet: About your voice. Online at: http://www.entnet.org/HealthInformation/ aboutVoice.cfm

8| Boyse, K. (2008). Speech and language delay and disorder. Retrieved from the University of Michigan Health System website: http://www.med.umich.edu/ yourchild/topics/speech.htm

NICHCY: 1.800.695.0285 6 Speech-Language Impairments (FS11) Readings and Articles

We urge you to read the articles identified in the References section. Each provides detailed and expert information on speech or language impairments. Additionally, we’d also recommend:

• Speech-Language Impairment: How to Identify the Most Common and Least Diagnosed Disability of Childhood | http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2491683/

• Speech and Language (Communication) Disorders | NOAH-Health | http://www.noah-health.org/en/bns/ disorders/speech/

Organizations to Consult

ASHA | American Speech-Language-Hearing Association Information in Spanish | Información en español. 1.800.638.8255 | [email protected] | www.asha.org

NIDCD | National Institute on Deafness and Other Communication Disorders 1.800.241.1044 (Voice) | 1.800.241.1055 (TTY) [email protected] | http://www.nidcd.nih.gov/Pages/default.aspx

Cleft Palate Foundation | 1.800.242.5338 | http://www.cleftline.org

Childhood Apraxia of Speech Association of North America | CASANA http://www.apraxia-kids.org

National Stuttering Foundation | 1.800.937.8888 | [email protected] | http://www.nsastutter.org/

Stuttering Foundation | 1.800.992.9392 | [email protected] | http://www.stuttersfa.org/

If there is a primary condition that is associated with the speech-language impairment, such as autism or learning disabilities, we’d recommend visiting NICHCY and using the “search” box to identify organizations that specialize in that primary condition.

FS11—January 2011

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

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

NICHCY: 1.800.695.0285 7 Speech-Language Impairments (FS11) Traumatic Brain Injury

NICHCY Disability Fact Sheet #18 Resources updated, March 2011

Susan’s Story What is TBI? for head injuries that can cause changes in one or more Susan was 7 years old A traumatic brain injury areas, such as: when she was hit by a car (TBI) is an injury to the brain while riding her bike. She caused by the head being hit • thinking and reasoning, broke her arm and leg. She by something or shaken • understanding words, also hit her head very hard. violently. (The exact defini- The doctors say she sustained tion of TBI, according to • remembering things, a traumatic brain injury. special education law, is When she came home from given in the box on the next • paying attention, the hospital, she needed lots page.) This injury can change of help, but now she looks how the person acts, moves, • solving problems, fine. and thinks. A traumatic brain injury can also change how a • thinking abstractly, In fact, that’s part of the student learns and acts in problem, especially at school. school. The term TBI is used • talking, Her friends and teachers think her brain has healed • behaving, because her broken bones • walking and other have. But there are changes physical activities, in Susan that are hard to understand. It takes Susan • seeing and/or hearing, longer to do things. She and has trouble remembering is the things. She can’t always National Dissemination Center • learning. find the words she wants for Children with Disabilities. to use. Reading is hard for The term TBI is not used her now. It’s going to take NICHCY for a person who is born with time before people really 1825 Connecticut Avenue N.W. a brain injury. It also is not understand the changes Washington, DC 20009 used for brain injuries that they see in her. 1.800.695.0285 (Voice / TTY) happen during birth. 202.884.8200 (Voice / TTY) [email protected] http://nichcy.org

Disability Fact Sheet #18 (FS18) The definition of TBI in the box to the right comes Definition of “Traumatic Brain Injury” under IDEA from the Individuals with Disabilities Education Act Our nation’s special education law, the Individuals with Disabilities (IDEA). The IDEA is the Education Act (IDEA), defines traumatic brain injury as. . . federal law that guides how schools provide special Traumatic brain injury means an acquired injury to the education and related ser- brain caused by an external physical force, resulting in vices to children and youth total or partial functional disability or psychosocial with disabilities. impairment, or both, that adversely affects a child’s educational performance. Traumatic brain injury applies How Common is TBI? to open or closed head injuries resulting in impairments in one or more areas, such as cognition; language; Approximately 1.4 mil- memory; attention; reasoning; abstract thinking; judg- lion people receive traumatic ment; problem-solving; sensory, perceptual, and motor brain injuries every year.1 Of abilities; psychosocial behavior; physical functions; children 0-14 years old, TBI information processing; and speech. Traumatic brain results in 435,000 trips to the injury does not apply to brain injuries that are congenital emergency room annually, or degenerative, or to brain injuries induced by birth 37,000 hospitalizations, and trauma. [34 Code of Federal Regulations §300.8(c)(12)] nearly 2,700 deaths.2 What Are the Signs of TBI? side of the body, or both slowly. They may have The signs of brain injury sides. trouble talking and can be very different depend- listening to others. They ing on where the brain is • Difficulties with thinking: may also have difficulty injured and how severely. Because the brain has with reading and writing, Children with TBI may have been injured, it is com- planning, understanding one or more difficulties, mon that the person’s the order in which events including: ability to use the brain happen (called sequenc- changes. For example, ing), and judgment. • Physical disabilities: children with TBI may Individuals with TBI may have trouble with short- • Social, behavioral, or have problems speaking, term memory (being able emotional problems: seeing, hearing, and using to remember something These difficulties may their other senses. They from one minute to the include sudden changes may have headaches and next, like what the in mood, anxiety, and feel tired a lot. They may teacher just said). They depression. Children with also have trouble with may also have trouble TBI may have trouble skills such as writing or with their long-term relating to others. They drawing. Their muscles memory (being able to may be restless and may may suddenly contract or remember information laugh or cry a lot. They tighten (this is called from a while ago, like may not have much spasticity). They may also facts learned last month). motivation or much have seizures. Their People with TBI may have control over their emo- balance and walking may trouble concentrating and tions. also be affected. They only be able to focus may be partly or com- their attention for a short A child with TBI may not pletely paralyzed on one time. They may think have all of the above difficul-

NICHCY: http://nichcy.org 2 Traumatic Brain Injury (FS18) ties. Brain injuries can range • Early intervention | child’s needs. In the from mild to severe, and so A system of services fall of 2007, nearly can the changes that result to support infants 25,000 school-aged from the injury. This means and toddlers with children (ages 3-21) that it’s hard to predict how disabilities (before received special an individual will recover their 3rd birthday) education and from the injury. Early and and their families. related services in ongoing help can make a big our public schools difference in how the child • Special education under the category of recovers. This help can and related “traumatic brain include physical or occupa- services | Services injury.”3 tional therapy, counseling, available through and special education. the public school What About School? system for school-aged It’s also important to children, including Although TBI is very know that, as the child grows preschoolers (ages 3-21). common, many medical and and develops, parents and education professionals may teachers may notice new To access early intervention: not realize that some difficul- problems. This is because, as To identify the EI program in ties can be caused by a students grow, they are your neighborhood, consult childhood brain injury. expected to use their brain in NICHCY’s State Resource Sheet Often, students with TBI are new and different ways. The for your state (it’s available thought to have a learning damage to the brain from the online on NICHCY’s disability, emotional distur- earlier injury can make it website). Early intervention is bance, or an intellectual hard for the student to learn listed under the first section, disability. As a result, they new skills that come with State Agencies. The agency don’t receive the type of getting older. Sometimes that’s identified will be able educational help and support parents and educators may to put you in contact with the they really need. not even realize that the early intervention program in student’s difficulty comes your community. There, you When children with TBI from the earlier injury. can have your child evaluated return to school, their educa- free of charge and, if found tional and emotional needs Is There Help Available? eligible, your child can begin are often very different than receiving early intervention before the injury. Their Yes, there’s a lot of help services. disability has happened available, beginning with the suddenly and traumatically. free evaluation of the child. To access special education They can often remember The nation’s special educa- and related services: We recom- how they were before the tion law, IDEA, requires that mend that you get in touch brain injury. This can bring all children suspected of with your local public school on many emotional and having a disability be evalu- system. Calling the elemen- social changes. The child’s ated without cost to their tary school in your neighbor- family, friends, and teachers parents to determine if they hood is an excellent place to also recall what the child was do have a disability and, start. The school should be like before the injury. These because of the disability, able to tell you the next steps other people in the child’s need special services under to having your child evalu- life may have trouble chang- IDEA. Those special services ated free of charge. If found ing or adjusting their expecta- are: eligible, he or she can begin tions of the child. receiving services specially designed to address your

NICHCY: http://nichcy.org 3 Traumatic Brain Injury (FS18) Therefore, it is extremely important to plan carefully Tips for Parents for the child’s return to school. Parents will want to find out ahead of time about • Learn about TBI. The more you know, special education services at the more you can help yourself and the school. This information your child. The resources and organiza- is usually available from the tions listed in this fact sheet offer a great school’s principal or special deal of information about TBI. education teacher. The school will need to evaluate the • Work with the medical team to under- child thoroughly. This evalua- stand your child’s injury and treatment tion will let the school and plan. Don’t be shy about asking questions. Tell them parents know what the what you know or think. Make suggestions. student’s educational needs • Keep track of your child’s treatment. A 3-ring binder or are. The school and parents a box can help you store this history. As your child will then develop an Indi- recovers, you may meet with many doctors, nurses, and vidualized Education Pro- others. Write down what they say. Put any paperwork gram (IEP) that addresses they give you in the notebook or throw it in the box. those educational needs. You can’t remember all this! Also, if you need to share It’s important to remem- any of this paperwork with someone else, make a copy. ber that the IEP is a flexible Don’t give away your original! plan. It can be changed as the • Talk to other parents whose children have TBI. There are parents, the school, and the parent groups all over the U.S. Parents can share practi- student learn more about cal advice and emotional support. Email NICHCY what the student needs at ([email protected]) or use NICHCY’s State Resource school. Sheet to locate parent groups near you. Look under the References heading “Organizations for Parents.” Find your state sheet at: http://nichcy.org/state-organization-search-by- state 1 National Center for Injury Prevention and Control. (2009). • If your child was in school before the injury, plan for What is traumatic brain injury? his or her return to school. Get in touch with the Available online at the Centers for Disease Prevention and school. Ask the principal about special education Control (CDC) website: http:// services. Have the medical team share information with www.cdc.gov/ncipc/tbi/TBI.htm the school.

2 Ibid. • When your child returns to school, ask the school to test your child as soon as possible to identify his or her 3 Data Accountability Center. special education needs. Meet with the school and help (2009). Data tables for OSEP state develop a plan for your child reported data. Available online at: called an Individualized Educa- tion Program (IEP). • http://www.ideadata.org/ TABLES31ST/AR_1-2.htm • Keep in touch with your child’s • http://www.ideadata.org/ teacher. Tell the teacher about TABLES31ST/AR_1-3.htm how your child is doing at home. Ask how your child is doing in school.

NICHCY: http://nichcy.org 4 Traumatic Brain Injury (FS18) Tips for Teachers

• Find out as much as you can about the child’s injury and his or her present needs. Find out more about TBI through the resources and organizations listed in this fact sheet. These can help you identify specific techniques and strategies to support the student educationally. • Recognize that you can make an enormous difference in this student’s life! Find out what the student’s strengths and interests are, and emphasize them. Create opportunities for success. • If you are not part of the student’s IEP team, ask for a copy of his or her IEP. The student’s educational goals will be listed there, as well as the services and classroom accommodations he or she is to receive. • Make sure that needed accommodations are provided for classwork, homework, and testing. These will help the student learn successfully. • Show the student how to perform new tasks. Give directions one step at a time. For tasks with many steps, it helps to give the student written directions. • Check to make sure that the student has actually learned the new skill. Give the student lots of opportunities to practice the new skill. • Give the student more time to finish schoolwork and tests. • Have consistent routines. This helps the student know what to expect. If the routine is going to change, let the student know ahead of time. • Show the student how to use an assignment book and a daily schedule. This helps the student get organized. • Realize that the student may get tired quickly. Let the student rest as needed. Reduce distractions. • Keep in touch with the student’s parents. Share information about how the student is doing at home and at school.

NICHCY: http://nichcy.org 5 Traumatic Brain Injury (FS18) Organizations

Brain Injury Association of America | • Main website: http://www.biausa.org/ • Find your state BIA affiliate: www.biausa.org/state-affiliates.htm • National Brain Injury Information Center (brain injury information only) 1.800.444.6443

National Resource Center for Traumatic Brain Basic Readings Injury (NRCTBI) http://www.neuro.pmr.vcu.edu/

American Academy of Family Physicians. Brainline (2010). Traumatic brain injury. Online at: http:// Information available in English and Spanish. familydoctor.org/familydoctor/en/diseases- [email protected] conditions/traumatic-brain-injury.html http://www.brainline.org/

CDC | Centers for Disease Control and Preven- The Perspectives Network, Inc. tion. (2010). Traumatic brain injury. [email protected] Online at: www.cdc.gov/TraumaticBrainInjury/ http://www.tbi.org

National Institute of Neurological Disorders Family Caregiver Alliance and Stroke. (2011, January). NINDS traumatic Information in English, Spanish, and Chinese. brain injury information page. Online at: http:// http://www.caregiver.org/caregiver/jsp/ www.ninds.nih.gov/disorders/tbi/tbi.htm home.jsp

TBI Recovery Center http://www.tbirecoverycenter.org/

FS18—Resources updated, March 2011

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

This publication is made possible through Cooperative Agreement #H326N080003 between FHI 360 and the Office of Special Education Programs, U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government. IIaya Angelou PCS Shaw Camous l85l 9th Streer, NW 5600 ' Washington, DC,

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Requirements of etigibitity dererminalion The student musl meet each numbered crirerion (and hdve doutmenration der lo ba contidered to support der:ision) in or- eligible as a student v,ith fhe ctisabititv named above

Directions: Check lhe box below team il'the has eviclence to show that rhe srudent meels rhe

Eligibility Criteria l. 1'he impair hyperactivity disorder, diabetes, epilepsy' a heart condition, hernophilia, lead poisoning, leukemia, nephritis, rheumatic sickle cell anernia, and Tourette syndrome; fever,

Identily speci6c dtagnosis or diagnoses:

t adversely affects a student's Aucationrl mpact on d ntal or academic lunctioiini is rrct

The ieam reviewedlll-Elivanr ion and ot exlsttng dafa alld determioed that: -\ J}le - student meets all ol the criLcria lor thc specified disability

sturtfrit lrot mee! all of th* rdd criteria for thc Date ol Decision

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lnformation

Information School Name: Sharv Campus Case Manager: Jennifer Disabiliry Worksheet

Teams should usc the following checklist as a tool to facilirate discussion about the dete ams are expected [o use evidence including evaluation inftrrmation and other existing data to dir- ferential determination of eligibi liry.

Specifi c Lea rning Disability

eligibility fiDtmination. part t The stuclenr musr meer o!l oJ the criteriaJor either oprion A-Di.screpuncv ll,toctel oR oprion B-Scientfic Research-Based Interventions Model ,4ddilionolly, the reoil murt conplete oll a/ the required documentation ossocioted ||ilh port: II and Ill.

Dircclions Use lhe inJbrmalion below lo guide discussion and as o u,orksheet to doclmenr evidence ro supporl crireria Jor sLD Nore: If fitund eligihlefor sLD, lhb inlormation musr he enlered into Eas-yIEP in order to meer lhe speci,fic requirententsfor sLD delerminotion t4 cFR it00.3r t.

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Part I: S[-D Identification Model (Team must discuss ard record decisions related ments of EITIIER ALI- of the require- the Discrepancy l\{odel oR the Scientific Resesrch-Based Interventions Moder) Model riterion l: Ttre stuaent aoes not achiiv" ffi ::* ::: j::i :i ::r li{i i:'ilffi? H: I ;lyil..ffi il'

Criterion 3: requlrcmcnt) Lack of appropriareT*srrucrronlnTeaain[ to the essential cornponents phonics, reaalng instnrction ,o,r"rri; fluency, vocabulary and comnrehenq apf awareness, Lack rnstruction in Lack of a e lnstructton ln A visual, , or moior di isabiIiry (knot nis nrcntrt rctarda tion Emotional disrurbancc Cultural factors Yes No -

5 9258M6 Page: 2 Maya Angelou pCS Shaw Campus I i4.

}lala Angelou PCS Shaw Camous l85l 9th Street, NW 5600 ' Washington, DC,

ption B: Sc erlon I; ',l'he stu nt must meet la ANDfb-OR-fa -Yes_No order to satisly I Criterion la: The student's response to scicntitic research based interventions indicates that achieving adequatelv the studenr is not for their age or to meet age or state-approyed grade-level standards in one or m0re of the following areas' when provided with learning experiences and instruction appropriate lbr the student,s age approved grade-leveI standards: or state- E ! Reading fluency skiils ension E Reading comprehension fl Mathernatics L_l= calculation = ! &lathematics problem solving AND Criltrion Ib; The student does not make sullicient pfogress to meel age or District of Columbia t,carning Stan- arcas itlentiricd above when using a proeess :J.'.ff;ffit,ffI;i,:T based on rhe studerrls response to scienriric, Yes No Criterion lc; 'I'he r,rdu,, -_ tivc to age' District _*,^ , _- ,cllGGenl,;Eth,rei; of Columbia Learning Standards, or intellectual development, thf,t is determined by the group t0 be relevant to the identification ofa specific rearning disabirity, using appropriate assessmenrs ANI) No Criterion ld: The student e.rhibits characleristics of lcarn disabilities consistent with the definition.

ffi.

9258646 Page: 3 Maya Angelou PCS Shaw Campus Maya Ang-elou PCS Shaw Campus 1851 9th Street, NW 5600 ' Washington, DC,

terion 2: on the student's achievement level tlrc result of \ No Lack of appropriate insrruction in r

-Yes phon i cs. ll uen cy, vocabulary and comprehension) Y No Lack ol appropnate inslruction in math -Yes \ No t-uct -Yes \ No -Yes \ No Intellectual Disability -Yes \ No Emotional disturbance -Yes \ No Culfurai factors -Yes \ No Env' -Ycs and student-centercd data coJlected @ terventi on/S trate Progress Monitoring Tool Outcome l,trc 6 Cafulatur Tt[tluv oB,a.vntui*l \tud{r{- bl.wfr';t *irrvr- t\ffrK E6t4^flt l Ca,V,wM|for, f fu urzl tl^e g,a! cnb,frv fi ofuot-, -ltwW o\)lr/ai:.an\ -*frYtu -iliUr1c Sorn2tr-S t anwY 0L{ avr8lrarrrt'J - t n['Af L;-,'{t wwtilif\:

notified of all (Response to all must be yes in order to meet the requiremrnt)- \Yes- o 'fhe Statc's policies | ing the amount nature of student data that be collected and thc gencral education services that would be provided; \Yes-No ralegies lor rncreasing the studeot's rate iunrng LYes_No Thc parents' rrght to request an evaluation

Tah 925864(' Maya Angelou PCS Shaw Campus Page: 4 MayaAngelou PCS Shaw Campus l85l 9th Street, NW 5600 Washington, DC,

Part ll: Documentation of Other Facrors

umentation oI

ibe the relevant r, if any, nored during observation I of snd the relarionshrp t behar.rrrr Lu [l)('stud(nt's aca- dcmic fi.:nctioning Stuau*r\ I ,+*to. # kJ hrd^ Pzs w!,tS whvnv'' ha"tt

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Part III: SLD Decision

Dccision t evaluation and other existing data and determi ----r 'fhe studenr mccls all of the criteria for the specified disability

The srudent does not meet all oi the required criteria lor the specified disabili r\ll team members documentcd tnci@ort conclusious o,r rhieifururhty acterminarffi form' (Team members disagreement in with the determination must submir a written statement documenting their decision). Date of Decision:

qr 9258645 Maya Angelou PC'S Shaw Campus Page: 5

Maya Angelou PCS Shaw Campus l85l gth Street, NW 5600 Washington, DC,

tudcnt lnlbrmation

Student Name: Student ID: Date of Birth: 0411311994 Student Grade: I I hool Information School Name: Mava Anselou PCS Shaw Ca C'ase Manager: Jenniler T, 'l rova Disability Worksheet

leams should use the lollowing checldist as a tool to facilitate discussion about the detemrination of eJigibiliry lor a specific disability Teams are expected to use cvidcnce including evaluation information and other existing data to confirm or deny each criterjon in order to makc a dif- lerential determination of el igibility.

ilion: Lmotionol Dislurbonce (ED) is deJ'tned as on inability lo leorn lhol connot be explained by intelleclual, sensory', or heqllh foclors and exists over a long period oJ lime and to a marked degree, und lhut odversely aJfects a chilcl's educuliona! perjormunce Emotional Disturbonce includes schizophrenia Federol and State rcgrlation reference 34 CFR $300.8(c)(4), DCMR 3001.1

Requiremenls of eligibiliq, determination' The sludent mt6l meel each numbered criterion (and have documentatian to support decision) in order to be considered eligible as a studcnt wilh the di.rubilitv numed above

Directions'. Check the bot below if lhe team has evidence to show thql the sludenl meels lhe following crileria,

Eligibility Criteria l, The student exhibits one or more of the following characteristics over a long period of time thst is not generally accepted as age appropriate and/or ethnic or cultural norms AND adversely sffects the student in at least one of (he following areas: (Check all that apply) Acadernic Drosress Social relationshios Personal adlustment Classroom adiustment Sel f-care Vocarional skills Other: Specily

2. Behaviors are severe, chronic and frcquent. 3. Adversely impacts the student's educational performance to the extent that the student requires specially designed instruction. 4. Behaviors occur st school and at lesst one other setting, 5, Team-iiviewed and/or conducted hvo scientilic research-based interventions to address behavioraUemotional .skill deticiency,

6. Tcam documcnted the rcsults of the intervention, including pr(rgress monitoring ducumentatiun. 7. The student displavs at least one of the followinq (Check all that apply) An inability to build or maintain satisfactory interpersonal relationships with peers and Leachers

I n app ropri ate oI behavior or feclings under rronrral circumstarrces Pervasive unhappiness, depression or anxrety Physical symptoms, pains or fears associated with personal or school problems v lnabilrty to ieam thal cannot be explained by intellectual, sensory or health factors

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The team review

The studenr meets all of the criteria for the specified disabiliry

.-- The stutentrdoer ngt meet all of the required criteria lor tlc specified disabiliry Date of Dccision:

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