Below is a list of resources I use personally and professionally. Most are useful for all disabilities. Hope you find this helpful.
Louisiana Down Syndrome Organizations:
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:
To find a Down Syndrome Support Group in your state or Country use this link:
Down Syndrome and Sleep
Not all people with Down syndrome have the same symptoms. The way the condition affects each individual can be different. But getting quality sleep is one struggle that confronts many people with Down syndrome.
People with Down syndrome, both children and adults, have higher rates of Obstructive Sleep Apnea (OSA), a condition of disordered breathing during the night. Other sleep issues, like parasomnias and sleep anxiety, can pose significant issues for people with Down syndrome. There is an organization called Sleep Help based in Seattle that is focusing on this. Follow the link below to read more information and read ther guide about down syndrome and sleepy.
List OCDD in all states:
Find the Parent Center(s) for your state here:
To make your child’s wish come true fill out an application here:
Here’s a guide that provides information on the types of accommodations and services Disney provides for each type of disability:
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
Apply for or get more information on SSI for your child here:
Safety with Emergency Responders:
Able Accounts: Find Specific information for your state here:
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
Websites I always use:
- Families Helping Families ( Not just because I work here (; Seriously has great resources and information not just relevant to Louisiana)
- Parent Center Hub
- Child Mind
- The Mighty
- Special Needs Parenting ( Even though I’m not a parent )
- 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.