Educating Children and Teenagers
Returning to school after a brain tumor diagnosis and treatment marks a return to routine and normalcy. However, some children or teenagers may be reluctant to return to school due to the psychological, social and/or physical effects associated with a brain tumor diagnosis and treatment.
In addition, in the school setting, children/teenagers may begin to exhibit difficulties with class work due to the short-term or long-term effects associated with medical treatments for a brain tumor.
To help adjust to the "Back to School" transition, please read ABTA's, When Your Child Returns to School
To learn more, click on any number below:
1. Assistive Technology
2. Cognitive Late Effects
3. Learning Disabilities/Special Education
4. Online Support
5. School Re-entry
6. Transition Resources/Vocational Rehabilitation
ASSISTIVE TECHNOLOGY
ALLIANCE FOR TECHNOLOGY ACCESS (ATA)
707-778-3011
www.ataccess.org
The Alliance for Technology Access (ATA) is a national network committed to providing information and support services to children and adults with disabilities. Click on the “ATA Community” link on the home page to access an ATA center in your state. ATA offers an “ATA Hub,” which is a free service to locate and receive information on assistive technology products and services. Information is also available for students with disabilities who are facing the transition from public school to the next stage in life.
FAMILY CENTER ON TECHNOLOGY AND DISABILITY (FCTD)
202-884-8068
www.fctd.info
FCTD supports organizations and programs that assist children with disabilities and their families and provides a great deal of information on assistive technology. Information is available in English and Spanish. FCTD also offers online discussions and a monthly newsletter.
TECHNICAL ASSISTANCE ALLIANCE FOR PARENT CENTERS
888-248-0822
www.taalliance.org
Funded by the Department of Education and the Office of Special Education Programs, the Technical Assistance Alliance is a project which supports the purpose of developing, assisting and coordinating Parent Training and Information Projects and Community Parent Resource Centers under the Individuals with Disabilities Education Act (IDEA). To find your local parent center, click the map of the United States on the website homepage. Then click your region and state for more specific information.
CANDLELIGHTERS CHILDHOOD CANCER FOUNDATION
800-366-CCCF (2223)
www.candlelighters.org
The mission of Candlelighters is to provide information and awareness, support research and advocate for children and adolescents with cancer and their families. The Candlelighters’ website provides rich information on a variety of topics including cognitive late effects. Candlelighters also publishes a booklet entitled, “Educating the Child with Cancer.” Two copies of this booklet are free to families of children with cancer (one to keep and one to provide to the school); the cost to others is $19.95.
CHILDREN’S BRAIN TUMOR FOUNDATION (CBTF)
888-228-HOPE (4673)
www.cbtf.org
CBTF provides information, support and advocacy to families of young brain tumor survivors. CBTF provides information on medical late effects, educational late effects and Cancer Survivor Late Effect Clinics.
LEARNING DISABILITIES/ SPECIAL EDUCATION
LD ONLINE
www.ldonline.org
LD online is a website dedicated to learning disabilities for parents, teachers and other professionals. Basic information on learning disabilities, expert reviewed articles and an online yellow pages section to access information and tools on IDEA, IEP’s, locate an LD professional or product and a school or learning center.
NATIONAL CENTER FOR LEARNING DISABILITIES (NCLD)
888-575-7373
212-545-7510
www.ncld.org
NCLD is an organization committed to improving the lives of those affected by learning disabilities. NCLD provides the latest information on learning disabilities and local resources to parents, professionals, employers and others dealing with learning disabilities. To locate resources in a specific state, simply click “Resource Locator” and enter your state. Online publications can also be accessed at the NCLD website. NCLD also offers a Parent Resource Center and with an online community which includes message boards and chat rooms.
NATIONAL DISSEMINATION CENTER FOR CHILDREN WITH DISABILITIES (NICHCY)
800-695-0285
202-884-8200
www.nichcy.org
NICHCY is a central source of information on disabilities in youth and children, IDEA, No Child Left Behind and information on effective educational practices. State specific resources are available at the website. Information can also be accessed in Spanish by clicking the “En Espanol” tab. Resource pages for families, early intervention providers, schools and state agencies are available.
OFFICE OF SPECIAL EDUCATION AND REHABILITATIVE SERVICES (OSERS)
U.S. DEPARTMENT OF EDUCATION
202-245-7468
www.ed.gov/about/offices/list/osers/index.html
OSERS is committed to improving results and outcomes for people with disabilities of all ages. OSERS provides a wide array of supports to parents, school districts and states. Information on IDEA as well as a “Tool Kit on Teaching and Assessing Students with Disabilities” is available through the website. To access a number of resources for children with disabilities, click the tab entitled “Parents” on the top of the page. Then click “My Child’s Special Needs” and “Disabilities.”
TEACHING LD
www.teachingld.org
Teaching LD is a service of the Division for Learning Disabilities of the Council for Exceptional Children. Teaching LD provides publications and resources about teaching students with learning disabilities. Located on the homepage under the section entitled, “Teaching how- to’s,” articles can be downloaded on reading, writing, math, and helpful teaching hints. The website also offers a question and answer section.
ONLINE SUPPORT
BRAVE KIDS
800-568-1008
www.bravekids.org
Brave Kids is a non-profit organization that serves the needs of children with chronic life-threatening illness or disabilities. Brave Kids offers an online community, with message boards for parents and kids.
EDUCATING BRAIN TUMOR KIDS
http://groups.yahoo.com/group/EducatingBTKids
Educating BT Kids is an online education resource center for parents, schools, teachers and social workers. This listserv promotes questions and answers and resource linkage.
GROUP LOOP
www.grouploop.org
Group Loop is an online community for teens and their parents. On the Group Loop home page, click “Cancer, School & You” to learn about problem-solving and helpful tips when returning to school. Group Loop also offers online support groups and discussion boards.
IEP GUIDE
http://groups.yahoo.com/group/IEP_guide
This online listserv is available for parents, teachers and education professionals to discuss special ed., NCLB, Section 504, disability rights, etc. This listserv promoted questions and answers and resource linkage.
NATIONAL DISABLED STUDENTS UNION (NDSU)
www.disabledstudents.org
NSDU is a national student organization which offers a listserv (an e-mail discussion list) for students with disabilities of all ages throughout the United States.
PARTNERS FOR YOUTH WITH DISABILITIES (PYD)
617-566-4075- voice
617-314-2989- TTY
www.pyd.org
PYD is a national organization which offers one-to-one mentoring and group mentoring programs for youth with disabilities. PYD offers “Partner’s Online” an online community with forums and chat rooms. PYD also offers and online parent forum for parents to access support.
STARBRIGHT WORLD
www.starbrightworld.org
Starbright World (affiliated with the Starlight Starbright Foundation) is an online community for teens with chronic illnesses and their siblings. The online community includes a chat room, blogs, bulletin boards, contests and polls.
YOUTHHOOD.ORG
NATIONAL CENTER ON SECONDARY EDUCATION AND TRANSITION (NCSET)
www.youthhood.org/index.asp
The Youthhood.org website is a curriculum based tool that is devised to help young adults plan for life after high school. The website provides a variety of activities to include a private journal, life map and class notebook. The website offers a section for young adults and a section for parents.
SCHOOL RE-ENTRY
AMERICAN BRAIN TUMOR ASSOCIATION (ABTA)
800-886-2282
www.abta.org
ABTA offers a publication on school re-entry entitled, “When Your Child Returns to School.” This publication highlights questions to ask and steps to take to help prepare for your child’s return. Special education services are also discussed.
A DVD entitled, Alex’s Journey is also available through ABTA. This DVD is designed to provide school age children and classmates with basic information on brain tumors. This DVD can also be used as a tool for teachers to encourage discussion in the classroom.
www.abta.org/kids
ABTA offers a website for children to learn, share and participate in activities.
THE LEUKEMIA AND LYMPHOMA SOCIETY-SCHOOL AND YOUTH PROGRAMS- THE TRISH GREENE BACK TO SCHOOL PROGRAM
800-955-4572
www.schoolandyouth.org
The Trish Greene Back to School Program was developed to foster communication among health care professionals, parents, children and school staff. The Leukemia and Lymphoma Society’s national and local chapters offer the informational booklet entitled, “Learning & Living with Cancer: Advocating for your child’s educational needs.” Contact your local chapter to order this booklet.
LIVESTRONG AT SCHOOL
LANCE ARMSTRONG FOUNDATION
866-467-7205
www.livestrong.org/school
Livestrong at School is intended for teachers who would like to incorporate cancer education in the classroom. Livestrong at School offers a number of lesson plans, worksheets and videos for elementary, middle school and high school teachers.
PEDIATRIC BRAIN TUMOR FOUNDATION (PBTF)
800-253-6530
www.pbtfus.org
PBTF is a nonprofit organization committed to childhood brain tumor research and providing support to families. PBTF provides information and resources on education, which is located under the “Survivors” tab found on the PBTF website homepage.
STARLIGHT STARBRIGHT CHILDREN’S FOUNDATION
310-479-1212
www.starlight.org
A foundation which is dedicated to helping seriously ill children and their families cope with pain, fear and isolation through entertainment, education and family activities. Starlight Starbright offers a free Back to School DVD to help address issues teens face when returning to school. The DVD is geared towards teens with chronic illnesses and also addresses the importance of communicating with the physician and illustrates life in the hospital setting. Contact the foundation directly to order this free DVD.
TRANSITION RESOURCES/VOCATIONAL REHABILITATION
COLLEGE NAVIGATOR
NATIONAL CENTER FOR EDUCATION STATISTICS
www.nces.ed.gov/collegenavigator/
College Navigator offers a search tool to compare and contrast colleges for prospective students. This website also includes information on preparing and planning for college, financial aid and choosing a career. There is also a section for middle school and high school students called the NCES Kids’ Zone. In this section, there are a number of educational games and trivia and tools to search for colleges.
NATIONAL CENTER ON SECONDARY EDUCTION AND TRANSITION (NCSET)
612-624-2097
www.ncset.org
NCSET was established to create opportunities for youth with disabilities. NCSET coordinates national resources, provides technical assistance and disseminates information related to secondary education and transition. Click “State Contacts” on the NCSET homepage to access state resources and contact information.
NATIONAL YOUTH LEADERSHIP NETWORK (NYLN)
866-480-6565
www.nyln.org
NYLN works to promote leadership, education and employment for youth with disabilities by providing resources on employment and youth development. NYLN also offers a “youth expert” program where youth experts can speak at conferences, provide mentoring and technical assistance to organizations and agencies. Youth Experts focus on a wide variety of issues which include: employment, college or vocational school and independent living.
PACER CENTER
952-838-0190
888-248-0822
www.pacer.org
The PACER center is a parent training and information center for families of children and youth with all disabilities from birth through 21 years. The PACER center provides a number of educational materials for parents and professionals on education, vocational training and employment. Translated materials in Spanish, Hmong and Somali are also available.
VOCATIONAL REHABILITATION AGENCIES
www.jan.wvu.edu/cgi-win/TypeQuery.exe?902
Click on the alphabetical list of states to locate vocational rehabilitation resources within the specific state of interest. This website is part of the Small Business and Self-Employment Services (SBSES) which is under the Office of Disability Employment Policy of the U.S. Department of Labor.
Please click Educating Children and Teenagers to access/print this entire resource list and our bibliography list for parents, teachers and school staff.
ABTA Social Workers
ABTA Social Workers are available by telephone and/or email to help answer questions or provide further assistance. Please contact us at 1-800-886-2282 or socialwork@abta.org if you have questions, comments or suggestions. We encourage you to share your input with us!
The American Brain Tumor Association does not endorse any of the organizations and resources listed here, nor do we guarantee individuals will qualify for the services they provide. Please contact each organization for their specific guidelines.
May, 2009
2720 River Road
Des Plaines, IL 60018
Phone: 847-827-9910
Fax: 847-827-9918
Toll-free Phone: 800-886-2282
E-mail: info@abta.org