Guardianship

Down Syndrome Indiana is seeing an increase in the number of calls that it gets related to adult life issues. Guardianship is one of the issues at the top of the list. You see, once a child turns 18 they become their own legal guardian unless steps are taken ahead of time to have a legal guardian in place. If you pursue guardianship of your child, I highly recommend beginning the guardianship process when your child turns 17 so that you have everything in place when your child’s 18^th birthday rolls around. This is very important because it can take several months to get an appointment with your county court! Below is a simple checklist of items to help guide you in the right direction….

 

1.      Prior to your child’s 17^th birthday, please make sure you have a regular doctor that you see at least on an annual basis;
 

2.      When your child turns 17, talk to your doctor about guardianship. Your doctor will give you paperwork to fill out. Fill out and return in a timely manner;

3.      When your child turns 17, contact an attorney that is versed in guardianship to help you through the process. DSI can give you a list of attorney’s names that other parents have used;
 

4.      Celebrate your child’s 18^th birthday without worries!
 

5.      There is paperwork that needs to be filled out for the court on a regular basis if you become your child’s guardian. Please talk with your attorney to make sure you understand the follow up work that needs to be done.
 

Please note that if you would like to send your child’s name and birthdate to DSI, we are more than happy to send you a reminder letter around your child’s 17^th birthday.  You can also find out additional information by visiting our Ask the Expert page at: http://www.dsindiana.org/Guardianship.php.
 

It is my pleasure to serve you,




 

 

Lisa Wells, Executive Director

 

Rare set of books to benefit DSI

By Guest Blogger Greg Johnson

Fall is here it is time for the Down syndrome Buddy Walk(R) and The Hunger Games Book 2 "Catching Fire" will be released as a movie in just a few short weeks. Somewhere on a branch in Emily's Family Tree is a leaf by the name of Suzanne Collins the author of The Hunger Games. Suzanne graciously signed a SET of The Hunger Games books (yes all three are signed!) specifically for Down Syndrome Indiana to be raffled off in December 2013. Visit: http://www.dsindiana.org/Raffle.php for a form you may fill out and mail in for a chance to win this very RARE set of books. Yes this set is extremely RARE not only because of the popularity of the series but also because the 3rd book in the series has very few true "Autographed" copies. During the national book signings of the release of Mockingjay Suzanne had an injury to her hand and had a special STAMP she used for signing the books. This set she signed for DSI is the Real Mccoy! If you are interested do a web search on Autographed Hunger Games Books and see if you can find a Mockingjay copy Autographed and not STAMPED. Here is a link to the first book The Hunger Games http://hunger-games.net/rare-first-edition-signed-copy-of-the-hunger-games-book-on-sale/ notice the price for 1 BOOK!!!!! Not all 3 and I guarantee the even more RARE Mockingjay is worth 2 times that! Oh and don't forget book 2. My math tells me this set is worth around $10,000.00! So for a small $10 chance you could be the lucky winner of a great set of books and help a great organization at the same time! Good Luck and "May The Odds Be Ever In Your Favor!"

 

PS Please forward this to your friends and family!

 

Greg, Claudia and Emily Johnson

2013 Buddy Walk Top 5 Teams

A huge and heartfelt thank you to all of the 2013 Buddy Walk(R) Teams! You created an incredible amount of awareness about Down syndrome in our communities. Thank you!


The top 5 fundraising teams for the 16th Annual Buddy Walk® are as follows:

5th Place – Ella’s Fellas
4th Place  – Team Aurora
3rd Place – Mallory’s Minions
2nd Place – Isaac’s Deputies
1st Place – 21 DreamS

Congratulations Top 5 Fundraisers!

From the bottom of my heart, I would like to thank you for working so hard to raise awareness about Down syndrome. This year's top fundraisers are:

5 – Brook Lawson
4 – Buffy Smith
3 – Jason Ellis
2 – Mallory Ellis
1 – Beckie Lehman

Congratulations to ALL fundraisers! Thank you again!!!!

Team Packet Pick up Today!

It always amazes me how quickly time flies when we are having fun… and the Buddy Walk® is just around the corner!

 

To make the day easier on your family, we suggest that you pick up your team materials (t-shirts, signs, etc.) and turn in donations at the Early Bird Registration, this Friday October 4^th from 3:00 – 7:00pm at the Down Syndrome Indiana office.

 

If you have any questions or comments regarding the Buddy Walk®, please do not hesitate to ask – I am happy to help however I can!

 

Please note our *new* office location address: 708 E. Michigan Street, Indianapolis, IN 46202

 

See you soon!

 

Jessica Hadsell

Event Coordinator, Down Syndrome Indiana

American Academy of Pediatrics Releases Parent Version of Healthcare Guidelines

The American Academy of Pediatrics has released a parent version of the Healthcare Guidelines for Individuals with Down syndrome. They are available at:
http://www.healthychildren.org/English/health-issues/conditions/developmental-disabilities/Pages/Children-with-Down-Syndrome-Health-Care-Information-for-Families.aspx

NIH Launches First National Down syndrome Registry

Registry connects families and individuals with Down syndrome to researchers

 

The National Institutes of Health has launched DS-Connect, a Web-based health registry that will serve as a national health resource for people with Down syndrome and their families, researchers, and health care providers.

 

"The Down syndrome community has voiced a strong need for a centralized, secure database to store and share health information. DS-Connect fills that need, and helps link individuals with Down syndrome to the doctors and scientists working to improve their health and quality of life," said Yvonne T. Maddox, deputy director of the NIH's Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), which funded and developed the registry.

 

Participation in the registry is free and voluntary. Individuals with Down syndrome, or family members, on their behalf, may sign up to create personalized profiles with information about their health histories, including symptoms, diagnoses, and medical visits. The website has been designed to ensure that all information remains confidential. The site will separate users' names from their health information, so that individuals may compare their health information with that of all other participants in an anonymous manner.  

 

If participants give permission to be contacted, the registry coordinator can inform them of research studies in which they may be interested. Results from these studies will help researchers better understand Down syndrome and how to treat its accompanying health problems across the lifespan.

 

"DS-Connect is for people of all ages, not just children," said Dr. Maddox. "Right now, we don't have much data on older individuals with Down syndrome, and that's been a problem. People with Down syndrome are living longer, and researchers and physicians will require information about the health issues and needs of these individuals to make recommendations about their health care."

 

The Down Syndrome Consortium, a public-private group established in 2011 to foster the exchange of information on Down syndrome research, will be a critical player in helping to disseminate information about the registry to the Down syndrome community. The consortium includes individuals with Down syndrome and their family members, representatives from professional societies and advocacy groups, and NIH scientists.

 

"We've been fortunate to have so many experts and advocates provide input on this effort," said Dr. Maddox. "The establishment of this registry is a tremendous step forward for Down syndrome research, and the resource will become all the more beneficial as more individuals join in the months and years ahead."