RARE Toolkits

Below is a list of all of our current RARE Toolkits.

ADVOCATING FOR YOUR CHILD WITH A RARE DISEASE AT THEIR SCHOOL
RESOURCE GUIDE

Resource Guide

504 Plan

Center for Parent Information and Resources: There are many sources of information on Section 504. Rather than repeat the work of others, this page connects users with it! Use the links included on this page to find out more about Section 504 and what it means for students with disabilities.

Great Kids! “A Parent’s Guide to Section 504 in Public Schools”: Written by Mary Durheim, this article covers Section 504, key terms, and the types of accommodations a child can receive if determined eligible.

WrightsLaw’s “Discrimination: Section 504 and ADA”: This page covers frequently asked questions on 504 Plans.

Assistive Technology

AbleData: AbleData is the premier source for impartial, comprehensive information on products, solutions and resources to improve productivity and ease with life’s tasks. They provide a wealth of information to assist domestic and international customers and their family members, vendors, distributors, organizations, professionals and caregivers in understanding assistive technology options and programs available.

AssistiveTech.net: This national public website provides access to information on assistive technolgy devices and services as well as other community resources for people with disabilities and the general public.

Augmentative and Alternative Communication

American Speech-Language Hearing Association: Augmentative and alternative communication includes all forms of communication (other than oral speech) that are used to express thoughts, needs, wants, and ideas. This Association wants to make effective communication accessible and achievable for all.

International Society for Augmentative and Alternative Communication: This Society works to improve the lives of children and adults who use Augmentative and Alternative Communication, which helps millions worldwide who cannot rely on their natural speech to communicate.

United States Society for Augmentative and Alternative Communication: This organization is dedicated to supporting the needs and desires of people who use augmentative and alternative communication, as well as the family members, professionals and manufacturers making up this community. At USSAAC, members join forces to improve the services, resources and products used by children and adults who turn to AAC methods in order to communicate.

Genetic Conditions

GEMSS – Genetics Education Materials for School Success: The aim of GEMSS is to ensure all children with genetic health conditions succeed in school-life. GEMSS explains over thirty genetic conditions and offers helpful strategies for use in classrooms. These include ideas for emergencies, field trips, diets, communication, instruction, and more.

Inclusive Education

Center for Patient Information and Resources: Families with a child who has a rare disease often need information on early intervention (for babies and toddlers), school services (for school-aged children), therapy, local policies and transportation. Every state has at least one Parent Training and Information Center or Community Parent Resource Center to offer families just this kind of information. Use this interactive map on this site to find each in any given state or territory.

The Council of Parent Attorneys and Advocates, Inc.: This independent, nonprofit offers a peer-to-peer network of attorneys, advocates, parents and related professionals who are dedicated to protecting and enforcing legal and civil rights of students with disabilities and their families at the national, state and local levels.

Kids Together, Inc.: This nonprofit’s goal is to promote children with disabilities, so they can just be kids. They also want other people to understand that having a disability is one small part of the children they serve, and that they are more similar to all children than they are different.

National Center for Inclusive Education: The National Center on Inclusive Education at the University of New Hampshire’s Institute on Disability is a leader in the transformation of schools, so that students of all abilities are successfully learning in their home schools within general education settings.

PACER Center: The mission of PACER Center (Parent Advocacy Coalition for Educational Rights) is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents.

Public School Review: Public School Review provides facts and reviews on all schools searchable by state, county and city wide.  This site offers stats and facts regarding the school, population, courses, etc.

Individual Family Service Plan (IFSP)

• Center for Parent Information and Resources’ “Module 5: Procedures for IFSP Development, Review, and Evaluation”: This module takes a detailed look at what the Part C regulations require in terms of the procedures used to develop, review, and evaluate a child’s IFSP.

• Center for Parent Information and Resources’ “Module 6: Content of the IFSP”: This module takes a detailed look at the content that must be included in each child’s IFSP, according to the Part C regulations.

• Center for Parent Information and Resources’ “Writing the IFSP for Your Child”: The IFSP is a very important document, and you, as parents, are important members of the team that develops it. This webpage focuses on the IFSP–both the process of writing it and what type of information it will contain.

IFSP Web: This site offers an online assistance program designed to help families and professionals develop Family Service Plans for young children with disabilities.

Improving Early Learning Outcomes Webinar: Hosted by the Center for Parent Information and Resources, handouts and materials also are available for those interested.

Parent Information Center on Special Education: Since 1975, the Parent Information Center on Special Education has been providing information, training and support to families who have a child with a disability, so that they may participate effectively as team members in the Special Education process. This Center provides information on developing an IFSP and its components.

Special Education Guide: This guide is an online resource for parents and educators who want to master the terminology, procedures and best practices in special education. The writers are special education experts who cover everything from early intervention to ISFPs; IEPs and RTI, inclusion, classroom and behavior management; disability profiles for each category under IDEA and a Special Education Dictionary to master “SPED” jargon.

Wrightslaw’s Early Intervention (Part C of Individuals with Disabilities Education Act of 2004, or IDEA): This resource answers many questions about Early Intervention – what does it include, does my child qualify, what if I’m not happy with the services – and explains Part C of the IDEA legislation.

Individual Education Plan (IEP)

• Center for Parent Information and Resources’ “All About the IEP”: This webpage includes an overview of the IEP, the IEP team, the contents of an IEP and other important and pertinent information.

“IEP Essentials for Parents”: This article discusses the initial IEP process as required by the federal IDEA.

• U.S. Department of Education’s “A Guide to the Individualized Education Program”: The purpose of this guide is to assist educators, parents, and state and local educational agencies with implementing the requirements of Part B of the Individuals with Disabilities Education Act (IDEA) regarding Individualized Education Programs (IEPs) for children with disabilities, including preschool-aged children.

• WrightLaw’s “IEP Tips: Taping Meetings”: Written by Anne Eason and Kathleen Whitbread, this article includes tips about taping and what to do if you encounter resistance from school administrators.

• WrightsLaw’s “IEP Tips: What to Do at an IEP Meeting”: Written by Anne Eason and Kathleen Whitbread, these IEP tips are strategies for becoming a more effective, advocate participant in the IEP process for your child. The strategies offer common sense approaches about how to effectively advocate for your child, while learning how to provide input and build positive relationships with the school personnel who work with your child.

• WrightsLaw’s “Starting a New IEP Advocacy Year: Back to School Tips”: Written by Lisa Krizman, this list of tips can be used as the new school year approaches.

• WrightLaw’s “Individualized Education Programs”: This page includes articles, law and regulations, and tips about how to get quality services in your child’s IEP. You’ll also learn how to use tactics and strategies to negotiate with the school.

Positive Behavioral Interventions and Supports

Center on the Social and Emotional Foundations for Early Learning: CSEFEL is focused on promoting the social emotional development and school readiness of young children birth to age 5. CSEFEL is a national resource center funded by the Office of Head Start and Child Care Bureau for disseminating research and evidence-based practices to early childhood programs across the country.

Positive Behavioral Interventions and Supports: The Technical Assistance Center on Positive Behavioral Interventions and Supports is established by the U.S. Department of Education’s Office of Special Education Programs (OSEP) to define, develop, implement, and evaluate a multi-tiered approach to Technical Assistance that improves the capacity of states, districts and schools to establish, scale-up and sustain the PBIS framework. Emphasis is given to the impact of implementing PBIS on the social, emotional and academic outcomes for students with disabilities.

School Nutrition Program

• Example of a “Medical Referral for Special/Modified School Meals” found through New Albany-Floyd County Consolidated School Corporation School Health Services: If dietary modifications are necessary for the student, a completed medical statement is needed. This is an example of a form you may have to fill out.

United States department of Agriculture Food and Nutrition Service: Accommodating Children with Special Dietary Needs in the School Nutrition Programs: Guidance for School Food Service Staff: This document provides information on the process of obtaining specialize and modified meals in the school environment. It has references on forms that need to be completed to obtain specialized nutrition services.

Parents Learn About the School Nutrition Program: This page provides answers to many of the frequently asked questions from parents on how benefits are provided under the school meal programs.

School Nutrition Program FAQ’s: The School Nutrition Association is a national, nonprofit professional organization representing more than 55,000 members who provide high-quality, low-cost meals to students across the country. This page provides information on school meals.