February 2011 | News You Can Use

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February 2011

Photo of a groundhog, in keeping with Groundhog's Day on February 2nd!

Did he see his shadow?


Greetings! Happy Day-After Groundhog’s Day! Is spring just around the corner? Seems a bit hard to believe, no matter what the groundhog saw or didn’t see. The icon of the Technical Assistance and Dissemination Network funded by OSEP.There are many great resources coming from OSEP’s TA&D Network (these are marked with the TA&D logo you see to the left) and from organizations beyond the network. May these help you and yours, personally and professionally, now or as time goes by. We welcome your feedback. Please feel free to contact us at nichcy@aed.org. Our best to you, as always.

Your friends at the National Dissemination Center for Children with Disabilities


THIS MONTH FROM THE NATIONAL DISSEMINATION CENTER This month, we’re pleased to offer the 2011 version of our fact sheet on Rare Disorders. It’s been greatly expanded and now includes these sections:

  • Organizations addressing rare disorders
  • Genetics and genetic disorders
  • The Human Genome Project
  • Laws you may not have heard of
  • Orphan drugs
  • The undiagnosed condition

Find the fact sheet at: http://www.nichcy.org/disability/specific/raredisorders

We’ve excerpted from the fact sheet for our Special Topic below on Rare Disorders.

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Rare Disease Day at NIH | February 28, 2011. There are about 7000 rare diseases identified in the United States. About 80% of rare diseases are genetic in origin and about 75% affect children. The 4th annual Rare Disease Day will take place on February 28th. Read all about it at the link below, where you can also connect with downloads, activities across the USA, and the knowledge base on rare diseases. http://rarediseases.info.nih.gov/RareDiseaseDay.aspx

NIH research results for the public. What’s NIH found in all its medical research? Have a look at this incredible list of fact sheets written for the public. Sign up to receive email updates from NIH on the results of its research. http://www.nih.gov/about/researchresultsforthepublic/index.htm

Speaking of research…are you a parent of a child on the autism spectrum? Want to take part in a study being conducted by Boston University? They’re out to develop a comprehensive measure of adaptive behavior of children and youth with autism spectrum disorders (ASD), ages 3-21 years. The researchers are looking for 600 parents (legal guardians) of children and youth with an ASD ages 3-21 from across the United States to complete an online survey that asks questions about their child’s ability to perform everyday life tasks, as well as about his/her behaviors. Read more about it, at: http://www.bu.edu/kidsincontext/

Minority health. The FDA Office of Minority Health was established in 2010, as required by the Affordable Care Act. Visit its shiny new website! http://www.fda.gov/minorityhealth

Three goodies from Wrightslaw. Wrightslaw is a great resource, isn’t it? Here are 3 articles you may want to check out.

Behavior Management and School-Related Behavior Problems http://www.wrightslaw.com/nltr/11/nl.0201.htm

The Do’s & Don’ts of Parent Advocacy http://www.wrightslaw.com/nltr/11/nl.0125.htm

Will Retention Help Your Child? http://www.wrightslaw.com/nltr/11/nl.0118.htm

A national scan of parent leadership training programs. Annenberg Institute senior consultant Anne Henderson looks at four successful parent training programs across the country and offers up strategies that can be used by cities and districts looking to implement similar initiatives. http://annenberginstitute.org/publication/building-local-leadership-change-national-scan-parent-leadership-training-programs

Fact sheets for youth with disabilities, written by youth with disabilities. KASA stands for Kids as Self-Advocates. It offers more than 60 fact sheets written by youth with disabilities on its Advisory Board and youth writers from its network. Great stuff. http://www.fvkasa.org/resources/index.php

Paraprofessional Toolkit: Working with a 1-on-1 aide in school. This toolkit is written BY youth, with sections for students, paras, and school administrators. Cost: $25.00 per toolkit ($20.00 for KASA members) including shipping. Download the order form at: http://fvkasa.org/KASA%20PTK%20order%20form%20wcover.doc

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In praise of NECTAC’s eNotes. The icon of the Technical Assistance and Dissemination Network funded by OSEP.We’ve said it before, but we’ll say it again. The best news source on the block for early intervention/early childhood is NECTAC. Sign up for its eNotes and let the news come to you. (BTW, check out the resources listed in the January 28 issue of eNotes.) http://www.nectac.org/enotes/enotes.asp

Recruitment and retention of EI professionals. The icon of the Technical Assistance and Dissemination Network funded by OSEP.This practice brief from the Personnel Improvement Center suggests strategies to improve the recruitment and retention of EI personnel, including related service providers such as occupational therapists, physical therapists, and speech-language pathologists. http://tinyurl.com/4dgp743

Family involvement in early childhood education. This research brief synthesizes the latest research that demonstrates how family involvement contributes to young children’s learning and development. http://tinyurl.com/4ru35bo

Young Latino infants and families: Parental involvement implications. This study provides a deeper understanding of how cultural practices combine with other factors to shape parenting behaviors among families in the United States in the first year of children’s lives. Several findings provide information about ways in which practitioners and Latino families can more effectively engage with young Latino children to influence their cognitive, social, language, and literacy development-and therefore facilitate their school readiness. http://tinyurl.com/4z3hzyb

Making data come alive for families through young children’s play. How to use children’s work as a unique type of student data to track development and share children’s progress with parents. From the Harvard Family Research Project. http://tinyurl.com/4hkgx96

Eligibility policies and practices for young children under Part B of IDEA. The icon of the Technical Assistance and Dissemination Network funded by OSEP.Hot off the press! From NECTAC. http://www.nectac.org/pubs/titlelist.asp#nnotes27

State characteristics: Kindergarten. This StateNote examines key components of each state’s kindergarten policy, including the lower compulsory age; entrance age; if districts must offer; and if students must attend. A December 2010 report from the Education Commission of the States. http://www.ecs.org/clearinghouse/90/71/9071.pdf

Best Practice Tutorial Series | Early childhood mental health. The Center for Early Childhood Mental Health Consultation (ECMHC) offers this series of six tutorials, which are designed to enhance users’ skills and knowledge around how to implement effective mental health consultation in Head Start and Early Head Start (HS/EHS) programs. http://www.ecmhc.org/tutorials/index.html

Early literacy learning: 3 from CELL. The icon of the Technical Assistance and Dissemination Network funded by OSEP.The Center for Early Literacy Learning (CELL) has released three new CELLcasts for parents (audio/video versions of CELL practice guides for viewing online or downloading to an iPod/Mp3 player).World of Words teaches parents where to find everyday literacy-rich opportunities in their community. Get Write on It discusses ways to encourage early writing in toddlers. Listen Hear focuses on helping children make letter and sound connections while learning to read and spell. http://www.earlyliteracylearning.org/ta_cellcasts1.php

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Video | Spelling as a diagnostic tool. The icon of the Technical Assistance and Dissemination Network funded by OSEP.Literacy expert Dr. Louisa Moats trains teachers across the country in how to interpret spelling mistakes. It’s important to learn what kinds of spelling errors can signal a child’s slow progress and the need for help. http://www.readingrockets.org/atoz/spelling_word_study#video

Reading Rockets’s newest booklist: On the Go in the New Year. The icon of the Technical Assistance and Dissemination Network funded by OSEP.It may still be winter, but the world isn’t hibernating – it’s on the move! Ride the rails, take a rocket ship to the moon, or put on wings and fly through poetry. An adventure awaits in the pages of these books. http://www.readingrockets.org/articles/books/c1225

NIH curriculum supplements for middle schools and high schools. The NIH curriculum supplements are teacher’s guides to two weeks of lessons on the science behind selected health topics. They combine cutting-edge biomedical discoveries with state-of-the-art instructional practices. Several titles are disability-related (e.g., The Science of Mental Illness); all are just plain interesting! http://science-education.nih.gov/customers.nsf/WebPages/CSHome

The brain’s inner workings: Activities for grades 9 through 12. This collection of multimedia resources and inquiry-based activities tied to the National Science Education Standards help teachers and students learn about the structure, function and cognitive aspects of the human brain. The packet includes a teacher’s manual, student manual, DVD of videos, and a CDROM of accompanying materials. http://www.nimh.nih.gov/educational-resources/brains-inner-workings/the-brains-inner-workings-activities-for-grades-9-through-12.shtml

Alphabet soup: School leaders overwhelmed by acronyms! The icon of the Technical Assistance and Dissemination Network funded by OSEP.This module from the IRIS Center will help you understand selected acronyms used in the field of special education and identify available resources for explaining frequently used special education acronyms. http://iris.peabody.vanderbilt.edu/activities/class/icl018.pdf

Effective reading interventions for students with LD. http://www.ldonline.org/article/33084

Center on Instruction has a new website! The icon of the Technical Assistance and Dissemination Network funded by OSEP.COI is a gateway to scientifically based resources on instruction. Check out its new website, at: http://www.centeroninstruction.org/

Q&A on funding RTI. New, from the National Center on RTI. The icon of the Technical Assistance and Dissemination Network funded by OSEP.

Youth subcultures: Understanding subgroups to better address barriers to learning. So…do you know the subcultures of today’s youth? Goth, hip hop, emo, jock, gang…to name a few. Here’s a series of information fact sheets that can help. http://smhp.psych.ucla.edu/materials/trainingpresentation.htm#fact

A training manual on conducting FBAs. The icon of the Technical Assistance and Dissemination Network funded by OSEP.The Practical Functional Behavioral Assessment Training Manual for School-BasedPersonnel is available from the PBIS Center (OSEP Technical Assistance Center on Positive Behavioral Interventions and Supports). http://www.pbis.org/pbis_resource_detail_page.aspx?PBIS_ResourceID=887

A roadmap to legal dispute resolution for sudents with disabilities. The icon of the Technical Assistance and Dissemination Network funded by OSEP.This article maps out the similarities and differences among the various routes to Individuals with Disabilities Education Act (IDEA) and Section 504 dispute resolution. http://www.directionservice.org/cadre/RoadmapLegalDR.cfm

On responding to a crisis. Besides natural disasters such as earthquakes and fires, students can experience traumatic events such as the suicide of friends, gang activity, snipers, rape, and hostage-taking. The Center for Mental Health in Schools has compiled this page of resources to help schools respond to a crisis. http://smhp.psych.ucla.edu/crisisresp.htm

Gateway to a world of resources for enhancing mental health in schools. This gateway is a links “map” that provides quick access to relevant resources on the internet with respect to:

  • mental health in schools
  • concerns related to children’s severe mental health disorders
  • concerns related to children’s psychosocial problems
  • positive social/emotional development and prevention of psychosocial/mental health problems, and
  • others focused on addressing barriers to learning and development.

Access the gateway at: http://smhp.psych.ucla.edu/gateway/gateway_sites.htm

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Free webinar on recruitment and retention. The icon of the Technical Assistance and Dissemination Network funded by OSEP.February 22, 2011 | 1 p.m. EST This webinar of the Personnel Improvement Center (PIC) will focus on state-level practices that support recruitment and retention programs. Hear from eight states that are implementing best practices in recruiting and retaining special education and related service personnel. Register at: https://tadnet.ilinc.com/perl/ilinc/lms/register.pl?activity_id=ppjfjck&user%20_id=

Three new practice briefs on recruitment and retention. The icon of the Technical Assistance and Dissemination Network funded by OSEP.Also from the PIC, these briefs highlight state and local level practices in the following areas:

Creating mentoring programs as a means of retaining qualified special education personnel http://tinyurl.com/4r5rdn5

Recruitment and retention of qualified early intervention personnel http://tinyurl.com/4dgp743

Using new social media to recruit and retain qualified special education personnel http://tinyurl.com/4megbhk

Cultural competency, what it is and why it matters. http://www.lpfch.org/programs/culturalcompetency.pdf

Funding a comprehensive system of learning supports. According to this 3-pager from the School Mental Health Project, the Louisiana Department of Education has developed a manual and tools to assist local education agencies in understanding how to integrate multiple funding sources to accomplish initiatives (such as the development of the state’s design for a Comprehensive Learning Supports System). Possible funding streams include Title I, II, III, IV, VI, X, School Improvement, MFP, and IDEA. http://smhp.psych.ucla.edu/pdfdocs/fundingstream.pdf

The U.S. Department of Education’s new dashboard. ED has launched a new website that provides transparent access to key national and state education data, highlighting the progress being made across the country in every level of the education system and encouraging communities to engage in a conversation about their schools. http://dashboard.ed.gov

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SPECIAL FOCUS:  Rare Disorders

“Alone we are rare. Together we are strong.” That’s the slogan of Rare Disease Day—February 28, 2011. Roughly 7,000 rare diseases/disorders have been identified as affecting the human race. Because they are rare, it can be a real challenge for a person to be diagnosed. Finding effective treatments, especially medicine, can also be a challenge—and for the same reason. Rareness. If you have a rare disease, know someone who does, or work with people who might, here’s a core of resources we hope are helpful. We’ve excerpted these from our newly updated Rare Disorders fact sheet, which has all of the info below, plus extra info in two categories:

  • The Human Genome Project
  • Orphan Drugs

Organizations Addressing Rare Disorders

NORD, the National Organization for Rare Disorders, at: http://www.rarediseases.org

Office of Rare Disorders at the National Institutes of Health, at: http://rarediseases.info.nih.gov/

Genetic and Rare Diseases Information Center (GARD) http://rarediseases.info.nih.gov/GARD/

DiseaseInfoSearch, for information on specific genetic conditions, at: http://www.geneticalliance.org/

Rare Disorders, at: http://www.rare-disorders.com/

The Children’s Rare Disease Network, at: http://www.crdnetwork.org/

The Rare Blog. http://www.crdnetwork.org/blog/

Genetics and Genetic Disorders

Three from the Genetic Alliance. If genetics or genetic disorders interest you, check out these three resources from the Genetic Alliance.

Understanding Genetics begins with a basic introduction to genetics concepts, followed by detailed information on topics such as diagnosis of genetic conditions, family history, newborn screening, genetic counseling, understanding patient stories, and ethical, legal, and social issues in genetics. http://www.geneticalliance.org/understanding.genetics

Making Sense of Your Genes: A Guide to Genetic Counseling includes general information about genetic counseling, tips on how to prepare for an appointment, and details about different specialties in the field. http://www.geneticalliance.org/counseling.guide

Students Living With a Genetic Condition: A Guide for Parents | You know how to identify and manage symptoms at home, and it may be scary to have someone else manage your child’s medical care in your absence. This guide provides information that may be helpful when writing a letter or when preparing to meet with your student’s teacher, school nurse, and physical education teacher or coach. This may also be a useful resource for bus drivers, babysitters, church leaders, or any other potential caregiver. http://tinyurl.com/23neulr

Frequently asked questions. Go to the link below, which is the landing page that can connect you to more info about genetic disorders, genetic testing, genetic counseling and evaluation, and how to locate a genetics professional. There’s also information on how genetics professionals help patients interpret and understand genetic information. http://www.genome.gov/27527652

GINA–the law against genetic discrimination. With genetic testing becoming increasingly pervasive in medical care and our daily lives, three of the most prominent organizations in genetics (the Genetics and Public Policy Center at Johns Hopkins University, the National Coalition for Health Professional Education in Genetics, and Genetic Alliance) have teamed up to produce educational materials about the Genetic Information Nondiscrimination Act (GINA), a landmark federal law that protects individuals from the misuse of genetic information in health insurance and employment. Start in at: http://www.ginahelp.org/

The Undiagnosed Condition

Learning about an undiagnosed condition in a child. http://www.genome.gov/17515951

Tips for those with an undiagnosed condition. http://rarediseases.info.nih.gov/GARD/TipsForAnUndiagnosedCondition.aspx

The Undiagnosed Disease Program @ NIH. http://rarediseases.info.nih.gov/Resources.aspx?PageID=31

Mystery Diagnosis | The TV Series. Heard of this TV show on Discovery? It frequently deals with rare diseases or disorders that have gone undiagnosed for years. Each episode tells a different person’s story—you hear from the person, the medical staff, and the person’s family. The link below takes you to the list of diseases the show has highlighted. Maybe your rare disorder is one of them! http://health.discovery.com/fansites/mystery-diagnosis/diseases.html

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Publication of this eNewsletter is made possible through Cooperative Agreement #H326N080003 between AED and the Office of Special Education Programs (OSEP) of the U.S. Department of Education. The contents 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 or by the National Dissemination Center for Children with Disabilities.


Comments on our newsletter? Too long? Too short? Off-target? Right on? Suggestions for future topics? Please feel free to contact us at nichcy@aed.org. We’re here to help you help children with disabilities.

NOTICE: NICHCY is going away, but its resources are not. Find hundreds of legacy NICHCY publications, as well as our training curriculum on IDEA 2004, in the Center for Parent Information and Resources' Library at http://www.parentcenterhub.org/resources. This website will remain available until September 30, 2014. After that date, web visitors will be automatically redirected to http://www.parentcenterhub.org.