Frequently Asked Questions

Questions

1. What is NICHCY, and what do you do?

2. My child is 8 years old and was recently diagnosed with Attention-Deficit/Hyperactivity Disorder (AD/HD) and a Learning Disability (LD). What information do you have that might be helpful?

3. I am a special education teacher in Iowa and I will have a new student in my class next month. She has Tourette syndrome. I can't find a fact sheet about this disorder on your site. Do you have information about Tourette syndrome?

4. My child with dyslexia is not doing well in school. He is 11 years old and getting extra help in a Learning Disabilities (LD) resource room. His Individualized Education Program (IEP) says he can go to the resource room two times a week but he is still failing most subjects. What do I do?

5. I know that the special education law (IDEA) was changed in December 2004. I would like to know more about the changes.

6. I have been teaching for 10 years. My school is moving to an inclusion model, and I need to learn more about how to include children with disabilities into my classroom. Do you have any information?

7. My daughter is 4 and was recently diagnosed with a rare disorder called Angelman syndrome. Do you have any information on this disability? How do I find other families? Can I get any financial help?

8. I work in an early intervention program serving families of infants and toddlers with disabilities. There is a family in our program that is moving out of state soon. How do I help them connect with services in their new town?

9. My son has Down syndrome and is 19 years old. He is ready to leave school soon, and we aren't sure what happens next.

10. I am a school nurse, and I have questions about a law called Section 504 and how it applies to students with diabetes. I understand this law has something to do with the Office for Civil Rights.

11. I am a student doing a paper on disability issues. Can you send me everything you have as soon as possible?

Answers

1. What is NICHCY, and what do you do?

   NICHCY is the National Dissemination Center for Children with Disabilities. We serve the United States, Puerto Rico, and the U.S. Territories, providing families, students, educators, and others with information on topics regarding children and youth with disabilities, birth through 22. Beginning in October 2003, this includes research-based information about effective practices for educating and providing services to children with disabilities, information about how the No Child Left Behind Act (NCLB) affects children with disabilities, and information about educational research programs and initiatives involving children with disabilities.

   Anyone may contact NICHCY for information. Many of our materials are available in Spanish and are also available in alternative formats upon request, such as on disk.

   At NICHCY we receive thousands of phone calls, letters, and e-mails every year from parents and professionals. Although we have many publications and other resources that you can order from us or read on our Web site, you may need to talk to one of our trained information specialists to help clarify or identify what you really need. Our information specialists have backgrounds in special education and other disability-related areas, and have worked as teachers, advocates, researchers, trainers, and social workers. Some are also parents of children with disabilities. They are happy to talk to you, help you figure out what you need, and answer your questions. Our staff of information specialists responds to requests, providing answers to a variety of questions, referring people to helpful resources in their state, and sending out NICHCY publications and/or materials that we have collected in our disability library.

   NICHCY is operated through Cooperative Agreement #H326N030003 between the Academy for Educational Development (AED) and the Office of Special Education Programs (OSEP), U.S. Department of Education. That means we operate within AED and are funded by a grant from OSEP. For more information, visit About Us. We do not have a mailing list for individuals nor do we have memberships. To find out about the latest products and services available from NICHCY, see our What's New page.

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2. My child is 8 years old and was recently diagnosed with Attention-Deficit/Hyperactivity Disorder (AD/HD) and a Learning Disability (LD). What information do you have that might be helpful?

   We receive many calls from parents whose child is newly diagnosed. It is an overwhelming time, and parents have many questions. When your child is first diagnosed, it is helpful to learn about:

   • the disability your child has been diagnosed with,
   • the rights your child has to special education and services under the law, and
   • support services available to parents of children with special needs.

   Learn more about your child's disability
   To learn more about ADHD and LD, you can read NICHCY's fact sheets on ADHD (FS19) and LD (FS7). These fact sheets give a brief overview of the disability, educational issues, and resources. Each NICHCY publication includes a list of sources for more in-depth information. To help you connect with information on the Internet on these two disabilities, we also offer the following:

   • ADHD 101

   • NICHCY Connections to LD

   
   

   Learn more about your child's rights
   We have several publications that can answer your special education questions. You may wish to start with these publications:

   • Your Child's Evaluation (BP1) (Basics for Parents)

   • Questions Often Asked by Parents About Special Education Services (LG1)

   Our other publications on education rights include:

   • Related Services (ND16)

   • A Parent's Guide: Special Education and Related Services: Communicating Through Letterwriting (PA9)

   
   

   Learn more about supports for parents
   NICHCY offers many different publications for parents to help you learn about the support and assistance that's out there. Here are our favorites:
   

   • Parenting a Child with Special Needs (ND20), which talks generally about parenting, using the words and advice of other parents like yourself about this unexpected journey you're on.
   
   
   
   • It's very important for families to hook up with the disability organizations and groups within their state. Our State Resource Sheets provide these valuable contacts.
   
   
   
   • The first contact we recommend for each family is the Parent Training and Information (PTI) Center that serves their state. The PTIs have good information and resources, and provide training on the Individualized Education Program (IEP) process as well as your rights under the IDEA and other laws. Find out all about what the PTIs do and how they help parents in our publication on Parent Training Information Centers.
   
   
   
   • Want to talk to another parent whose child has the same disability as your own? Find a match via the Parent-to-Parent program. Learn more, including Parent to Parent in your state, in our publication Parent to Parent Support.
   
   
   
   • We also let parents know how to contact organizations that focus on their child's specific disability, for example, the Learning Disabilities Association of America (LDA) and Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD).
   
   
   
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3. I am a special education teacher in Iowa, and I will have a new student in my class next month. She has Tourette syndrome. I can't find a fact sheet about this disorder on your site. Do you have information about Tourette syndrome?

   We do have information on this topic, although not a "NICHCY" publication. We will search our disability library and mail you the information we think will be helpful to you as a teacher. We would also refer you to the Tourette Syndrome Association, an organization that has a great deal of information on this disability.

   We also have information on many other disabilities. If you needed information about another disability, we'd recommend you look at our Disability Information page to see if we offer a fact sheet on the disability. If not, you could search our online Organizations database to see if there is an organization focusing on the disability. Not all of the organizations in our database are in the online version, so if you don't find what you want, call us for help at 1.800.695.0285 or email us. We will also take a look in our library to see what information we have that would be of use to you.

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4. My child with dyslexia is not doing well in school. He is 11 years old and getting extra help in a Learning Disabilities (LD) resource room. His Individualized Education Program (IEP) says he can go to the resource room two times a week, but he is still failing most subjects. What do I do?

   Information about the special education process is critical to addressing and resolving problems like this one. We have a number of publications for parents on the IEP process and the essential role the IEP plays in their child's education. These publications include:

   • A Parent's Guide: Special Education and Related Services: Communicating Through Letterwriting (PA9)

   • Questions Often Asked by Parents About Special Education Services (LG1)

   • Related Services (ND16)

   We often refer parents to the Parent Training and Information (PTI) Center which serves their state. The PTI is listed on each NICHCY State Resource Sheet. These projects provide valuable information and training on many subjects, including on the IEP process, laws under which your child has educational rights, accommodations, and advocacy. Read all about what PTIs have to offer you in our publication, Parent Training Information Centers.

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5. I know that the special education law (IDEA) was changed in December 2004. I would like to know more about the changes.

   NICHCY is pleased to provide information about the recently reauthorized law (known as the IDEA 2004) and its predecessor IDEA 97. We've devoted a separate and detailed section of our Web site to IDEA, at: www.nichcy.org/idea.htm. From this page, you can connect with:

   • our IDEA-related publications
     www.nichcy.org/ideapubs.asp

   • the story of the law's reauthorization in December 2004
     www.nichcy.org/reauth/scoop.htm

   • the law itself
     www.nichcy.org/idealaw.htm

   • the implementing regulations
     www.nichcy.org/idearegs.htm

   • summaries about the new law and how it's different from (and the same as) IDEA 97
     www.nichcy.org/resources/IDEA2004resources.asp

   • a series of briefs on the new law from the U.S. Department of Education itself
     www.nichcy.org/idealist.htm

   And speaking of the U.S. Department of Education, two of its offices, the Office of Special Education and Rehabilitative Services (OSERS) and the Office of Special Education Programs (OSEP), have a Web page devoted to information on IDEA 2004. Visit at: www.ed.gov/policy/speced/guid/idea/idea2004.html



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6. I've been teaching for 10 years. My school is moving to an inclusion model, and I need to learn more about how to include children with disabilities into my classroom. Do you have any information?

   Many good materials have been produced on how to best include children with disabilities in classes with typical children. We can connect you with some excellent resources on inclusion. Give us a call or email us. Here, online, you may wish to look at:

   • Accessibility Issues: Visit our connections to online resources about how to make your classroom physically accessible to students with disabilities and instructionally accessible through using a universal design for learning (UDL), a topic that's part of our A-Z topic, NICHCY Connections to the Disability Community, at:
     www.nichcy.org/resources/disability1.htm#access

   • Disability Awareness: What's it like to have a disability? What might your students without disabilities benefit from knowing to make inclusion work in your school? Find out more about disability awareness, including materials, at:
     www.nichcy.org/resources/disability1.htm#aware

   • Curriculum: Will you need to adapt curriculum for students with disabilities? Help them access the general curriculum? Where can you find materials appropriate to the needs of specific disabilities? Find what's out there via NICHCY Connections to Curriculum Resources, at:
     www.nichcy.org/resources/curriculum1.asp

   • Brain Matters: How do we learn? What's research have to say about our brains, how they process information, how to increase student learning both for students with disabilities and without? Try NICHCY Connections to Learning and the Brain, at:
     www.nichcy.org/resources/brain101.asp

   • Stopping Bullying: Sometimes students with disabilities can be targets for bullying, teasing, and other cruel and isolating actions of their peers without disabilities. Make sure this doesn't happen in your classroom by accessing the resources on the subject listed in NICHCY Connections to Bullying, at:
     www.nichcy.org/resources/bullying.asp

   • Behavior Issues: If behavior is an area of concern for any student (with or without disabilities), find a spectrum of expertise in our Behavior Suite (five separate resources page), beginning with NICHCY Connections to Behavior Expertise, at:
     www.nichcy.org/resources/behaviorexpertise.asp

   We also can refer you to organizations that provide information and support to school systems interested in inclusion. You also may wish to locate these organizations by searching our on-line database of organizations.

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7. My daughter is 4 years old and was recently diagnosed with a rare disorder called Angelman syndrome. Do you have any information on this disability? How do I find other families who have children with Angelman syndrome? Can I get any financial help?

   NICHCY has information on rare disorders, including some information on Angelman syndrome and other rare disorders. We can also tell you how to contact the national organization called the Angelman Syndrome Foundation. We can refer you to other organizations, such as the National Organization on Rare Disorders (NORD), who may be able to give you more information. Unfortunately, we do not have any information on financial assistance. Most states have some limited programs (usually county or city run) that provide some assistance to families of children with disabilities, though not necessarily financial help. These programs may include services such as respite (which is a term used to describe occasional babysitting), recreational programs, and after-school programs. Contact the Parent Training and Information Center (see NICHCY's State Resources) to learn what is available in your state.

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8. I work in an early intervention program serving families of infants and toddlers with disabilities. There is a family in our program that is moving out of state soon. How do I help them connect with services in their new town?

   We have a useful publication for families on the move. It is called Planning a Move, Mapping Your Strategy (PA8). Another NICHCY publication that might prove helpful to the family is entitled Finding Help for Young Children with Disabilities (PA2). For very comprehensive information on early intervention itself, have a look at Early Intervention, an eNews Foundations page. We also can provide the phone number of the state contacts for services for infants and toddlers (called early intervention) in the new state. This contact can connect the family with programs in their town. Another useful number for the family to know is the Parent Training and Information (PTI) Center (see NICHCY's State Resources) in the new state, which can tell the family about support groups and services.

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9. My son has Down syndrome and is 19 years old. He is ready to leave school soon, and we're not sure about what happens next.

   The discussion of options after high school is certainly one that needs to be addressed with the school as soon as possible. This is referred to as transition planning. Transition planning can begin at age 16 or earlier. We have several helpful publications on this topic:

   • Our Transition Suite, which covers all the basics of transition planning and connects you with resources intended especially for parents, for professionals, for students, and for students with specific disabilities.
   • A Student's Guide to the IEP (ST1)
   • Technical Assistance Guide: Helping Students Develop Their IEPs (TA2)
   • A Student's Guide to Jobs (ST2)
   • Technical Assistance Guide: Helping Students With Cognitive Disabilities Find and Keep a Job (TA3)

   The Parent Training and Information (PTI) Center that serves your state can also provide information and training on transition topics. In addition, we have contact numbers for The Arc (formerly known as the Association for Retarded Citizens), HEATH (the National Clearinghouse on Postsecondary Education for Individuals with Disabilities), the National Center on Secondary Education and Transition, and National Collaborative on Workforce and Disability for Youth (NCWD/Youth). These groups may also be helpful in your search. You should also be in contact with the Department of Rehabilitative Services and with the Social Security Administration in your area. Your local school will most likely have these numbers. If not, check your phonebook or call the state office of these associations. You can get also the number of the state DRS office from NICHCY's State Resources.

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10. I am a school nurse, and I have questions about a law called Section 504 and how it applies to students with diabetes. I understand this law has something to do with the Office for Civil Rights.

    We have some information on Section 504 of the Rehabilitation Act of 1973. Section 504 is a civil rights law that prohibits discrimination against anyone with a disability by an entity that receives federal funding. This includes public schools and can include such services as after-school programs that are housed in schools. Contact the Office for Civil Rights (OCR) for information and to identify the office that serves your region:

    (800) 421-3481; (202) 205-5413
    OCR@ed.gov  e-mail
    http://www.ed.gov/about/offices/list/ocr/index.html?src=mr  Web

    Contact us at NICHCY for the information we have on Section 504 and information on other organizations that may be helpful.

    Your state Parent Training and Information (PTI) Center is also a good source of information and training on Section 504. To identify your state's PTI, see NICHCY's State Resources.

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11. I am a student doing a paper on disability issues. Can you send me everything you have as soon as possible?

    For students with papers due shortly, we always recommend a visit to two areas of our Web site: A-Z topics and Publications. All NICHCY publications are available on-line in full text. You can also see our State Resources, or search our on-line database of organizations to locate organizations and disability groups whom you can also contact for information. We also have contact information on other centers and resources which might be helpful in your search. We're also pleased to offer an A-Z topics list, which will help many students locate information on the topics of high priority. If you do not have access to the Internet, then you may contact us to have information mailed to you. This usually takes 2-3 weeks. We have over 70 publications on disability topics. There is a small charge for some of our materials which must be prepaid.

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