Down with Joel
A Sibling Perspective: Spreading Love, Joy, and Encouragement for Down Syndrome
Resources
Below is a list of resources I use personally and professionally. Most are useful for all disabilities. Hope you find this helpful.
LOUISIANA
Louisiana Down Syndrome Organizations:
Louisiana Camps:
National Down Syndrome Resources
National Down Syndrome Groups:
- National Down Syndrome Congress
- National Down Syndrome Society
- The ARC
- Down Syndrome Diagnosis Network
- The Mighty on Down Syndrome
- Save Down Syndrome
Need help explaining Down Syndrome:
http://kidshealth.org/en/parents/down-syndrome.html#
To find a Down Syndrome Support Group in your state or Country use this link:
ALL DISABILITIES
List OCDD in all states:
National Directory State Agencies
Find the Parent Center(s) for your state here:
To make your child’s wish come true fill out an application here:
RECREATION
Summer Camps: I tried to add the ones that have locations in more than one state. I know there should be multiple in each state and if you want more information for your state specifically, I can help you look or you can contact your state’s parent center which is linked above.
- Camp Able
- Camp Capernaum
- League for People ( does not have multiple locations but I thought I’d add it since we don’t see many camp options for adults with DD )
- I Can Shine
Sports:
Social:
Apply for or get more information on SSI for your child here:
Safety with Emergency Responders:
http://www.justdigit.org/wallet-cards/
Employment:
Able Accounts: Find Specific information for your state here:
Guardianship:
- http://www.gottransition.org/resourceGet.cfm?id=17
- https://adayinourshoes.com/guardianship-adult-child-special-needs/
For more specific information in your state on guardianship, I think it’ll be best for you to contact your state’s Parent Center which is linked above. Here’s our story on guardianship : Continued Tutorship
Laws
IDEA:
- https://sites.ed.gov/idea/
- https://www.understood.org/en/school-learning/your-childs-rights/basics-about-childs-rights/individuals-with-disabilities-education-act-idea-what-you-need-to-know
- http://www.wrightslaw.com/idea/law.htm
- http://fhfjefferson.org/wp-content/uploads/2015/02/idea2004regs.pdf
- http://www.parentcenterhub.org/idea/
504:
- http://www.wrightslaw.com/info/sec504.index.htm
- https://www2.ed.gov/about/offices/list/ocr/504faq.html
- https://www.understood.org/en/school-learning/special-services/504-plan/understanding-504-plans
ADA:
- https://www.ada.gov/cguide.htm
- http://civilrights.findlaw.com/discrimination/the-americans-with-disabilities-act-overview.html
Civil Rights:
- https://www2.ed.gov/about/offices/list/ocr/letters/colleague-201612-504-restraint-seclusion-ps.pdf
- https://mlsvc01-prod.s3.amazonaws.com/8a030977001/ca5ac674-3163-4cc1-8c20-62d33bb2d149.pdf
- https://www.hhs.gov/ocr/index.html
IEP:
- https://www.understood.org/en/school-learning/special-services/ieps/understanding-individualized-education-programs
- https://www.understood.org/en/school-learning/special-services/ieps/download-parent-school-communication-log-for-your-iep-binder
- http://www.parentcenterhub.org/iep-overview/
- http://www.wrightslaw.com/info/iep.index.htm
- https://www.greatschools.org/gk/articles/what-is-an-iep/
Websites I always use:
- Wrightslaw
- Understood
- Families Helping Families ( Not just because I work here (; Seriously has great resources and information not just relevant to Louisiana)
- Parent Center Hub
- NTACT
- RAISE
- Child Mind
- The Mighty
- CTDI
- Special Needs Parenting ( Even though I’m not a parent )
Additional Links
- Free and short trainings for guardians on important topics: Self-Guided Trainings
- Connecting People with Disabilities to the Community
- Learning Activities
- Youth Health Transition
Eventually I’ll dedicate whole posts on specific topics listed here. I literally use this information/resources/links all the time for my job and they are super useful. Feel free to ask any questions.