In 2044, thirty years from now, Down Syndrome Indiana envisions a state where...

*If the text appears messy, please click on this link: http://dsindiana-exectivedirector.blogspot.com/2013/12/in-2044-thirty-years-from-now-down.html.

People with Down syndrome are included and successfully integrated into their communities:
 

·         It is widely understood that inclusion is a Civil Rights issue;
 

·         The Buddy Walk® successfully attracts both families of children with Down syndrome and those that have no connection at all;
 

·         People with Down syndrome receive the best educational tools, supports and curriculum available;
 

·         Urban planners and architects recognize the need to plan and build according to Universal Design principles;
 

Accurate and Up to Date Information is distributed: 
 

·         Down syndrome organizations serve as a one –stop shop for information and resources about Down syndrome;
 

·         Down syndrome Indiana’s website has appealing videos and easy to read, positive information about Down syndrome;
 

·         New Parent Packets are digital; 
 

·         DSI has an effective and far-reaching prenatal outreach program to ensure that accurate and up to date information is distributed when parents receive a diagnosis of Down syndrome; 
 

·         Medical professionals give the diagnosis of Down syndrome in an empathic, caring way and distribute accurate and up to date information to their patients;
 

·         The nonprofit community will continue to learn from the business community in terms of creating a system of best practices and consistent messaging through the use of shared materials;
 

All families regardless of race, ethnicity or income level feel included in the Down syndrome community:
 

·         There are a variety of community groups (smaller subsets of the larger Down syndrome organization) created to make sure that families have local support;
 

·         There will be an increase in groups that serve people with Down syndrome working together collaboratively to meet the needs of their families;
 

·         A high quality, well respected, “First Call” program promptly connects new parents with trained families;
 

·         All parents will have easy access to accurate and up to date information through their local library, community center, OB/GYN office, pediatrician’s offices, social worker, case manager or  local hospital;
 

·         There will be a variety of tutoring programs, literacy programs and free or low cost speech, occupational and physical therapy options available to parents;
 

Adults with Down syndrome desire to live more independently and:
 

·         Adults with Down syndrome work in community based employment;
 

·         Individuals with Down syndrome choose to participate in postsecondary education opportunities available in and out of state;
 

·         A larger variety of housing and independent living options available;
 

·         There are plenty of high quality affordable adult day programs and respite care opportunities; 
 

There is a medical model vastly different from the one that exists in 2014:
 

·         Down syndrome is no longer the least funded genetic condition per capita;
 

·         People with Down syndrome receive the best medical care to reach their full potential;
 

·         There are a variety of low-cost or free options for therapies;
 

Down Syndrome Indiana is a healthy, vibrant and sustainable organization:
 

·         Down Syndrome Indiana directly serves 50% of families that have a loved one with Down syndrome and live within DSI’s geographic scope. The remaining 50% of families are served indirectly; 
 

·         Down Syndrome Indiana’s main customers will be parents, guardians and housing facilities that cater to those with a disability, such as group homes;
 

·         Down Syndrome Indiana is not a place in and of itself. It is an integral part of a larger community working together to meet the needs of people with a disability;   
    

·         DSI serves the entire span of ages;
 

·         Down Syndrome Indiana staff, board members and volunteers have a high level of cultural competency;
 

·         Down Syndrome Indiana has a $5 Million dollar endowment ;
 

·         Down Syndrome Indiana successfully plans for the succession of its leadership;
 

Top Ten Local Ds News Stories of 2013

#1: Seclusion and Restraint

On Monday, February 4, 2013, an 8 year old girl with Down syndrome came home from school with her legs duct-taped as a form of disciplinary action. It left many families that have a loved one with Down syndrome or special needs wondering how this could still be happening… http://www.usatoday.com/story/news/nation/2013/02/05/duct-tape-special-needs-girl/1894777/.

 

 

#2: Indiana General Assembly Passes Seclusion and Restraint law

The Indiana General Assembly passed SB 345, which established the Indiana Commission on Seclusion and Restraint in Schools, required the commission to develop a statewide Model Seclusion and Restraint Plan, and required the state to adopt rules to minimize or eliminate the use of seclusion and restraints in schools. Under the law, all school corporations in Indiana, including accredited non-public schools, must have a plan on the use of seclusion and restraint in place by July 1, 2014.

 

 

#3: NIH Launches First National Down syndrome Registry

 

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. Participation in the registry is free and voluntary. 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.

 
 

#4: American Academy of Pediatrics Releases Parent Version of Healthcare Guidelines 

The American Academy of Pediatrics released a parent version of the Healthcare Guidelines for Individuals with Down syndrome to give parents and families information about the health care needs of children 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.

 

#5: Boy with Down syndrome Saves Student

 

A six-year old from Frankfort, Indiana becomes a local hero when he alerts staff that a fellow student is choking and in need of immediate assistance: http://www.wishtv.com/news/local/boy-with-down-syndrome-saves-student.

 

#6: Anti-Bullying

 

On May 11, 2013, HB 1423, Indiana’s Anti-Bullying Law was officially adopted. The law requires the Department of Education, in consultation with school safety specialists and school counselors, to develop guidelines to assist school corporations and safe school committees in establishing bullying prevention programs, investigation and reporting procedures, and discipline rules.

 

#7: The National Down Syndrome Congress in Indianapolis in 2014!

The National Down Syndrome Congress (NDSC) announces that the 2014 Annual Convention will be held in Indianapolis on July 11^th thru the 17^th. Registration opens March 3^rd, 2014. All local families are encouraged to register by April 1^st to take full advantage of what the conference has to offer.  More information available at: http://convention.ndsccenter.org/.

#8: ABLE Act of 2013 Reintroduced
The Achieving a Better Life Experience (ABLE) Act was reintroduced in the US Congress earlier this year.  The ABLE Act will give individuals with disabilities and their families the ability to save for their child's future just like every other American family, and help people with disabilities live full, productive lives in their communities without losing benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources. The account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation.

 

 

#9: Down Syndrome Indiana Launches Awareness Campaign

Down Syndrome Indiana (DSI) launched an awareness campaign aimed at deconstructing negative stereotypes and replacing them with more positive perceptions of what it means to have Down syndrome. The “Get to Know Me” campaign, was primarily focused in the social media and told the stories of Hoosiers with Down syndrome through photos, videos, and text. “Personal stories seem to resonate more with audiences than facts and statistics,” says Lisa Wells, Down Syndrome Indiana’s Executive Director. “We want to break some of the more harmful stereotypes that sometimes prevent people with Down syndrome from reaching their full potential.” Check out Down Syndrome Indiana’s Face Book page for more information.

#10: DSI Families Featured in Indy’s Child

The September edition of Indy’s Child featured several Down Syndrome Indiana families! Check it out at:  http://www.indyschild.com/Articles-In-This-Issue--i-2013-09-01-257797.114134-Down-Syndromes-Rising-Potential.html#543.

From the Desk of the Executive Director: Tips for Caregivers...

December is about the importance of family, especially caregivers. Caregivers can experience an increased amount of stress and that stress can have a negative impact on your health and well-being. “(Whitebird 2012). Don’t feel guilty if you are feeling stressed. What parent of a child with special needs isn’t? ( Hu  et al 2010). If you are feeling stressed, here are a few tips to help you…

 

Tip #1: Take Full Advantage of Respite Care Opportunities

Finding respite care continues to be one of the Top 10 most requested items at Down syndrome Indiana. You have to be your best in order to give the best care to your loved ones, no matter what their age. In fact, in 2010, there was a study published that recommended the optimal use of respite care to relieve caregiver stress. ( Hu 2010). Think it’s okay to be stressed? Well think again. “Parental Stress may have a negative effect on the mental health and behavior of children”. (Groeneveld et al. 2010).  Yet another study cites that “Both caregivers and children will benefit from a reduction of caregiver stress.”  (Groeneveld et al. 2010).  You are not alone in feeling stressed! If you are not aware of respite opportunities in your area, Down Syndrome Indiana has a factsheet that lists local respite opportunities. Please request a factsheet at lisa@dsindiana.org.

Tip #2: Exercise

 

Regular exercise is one of the best ways to manage stress. Walking is a great way to get started. Even everyday activities such as housecleaning or yard work can reduce stress. Stretching can also relieve muscle tension. Think you can’t afford the time or expense? Look at what the research says, “Caregiving is associated with a host of problems, including poor physical health leading to increased mortality, compromised immune function, emotional issues, social isolation, and mental health concerns such as depression and anxiety” (Whitebird 2012). Think again. You can’t afford not to find a way to exercise.

Tip #3: Be Social

Let your feelings out. Talk, laugh, cry, and express anger when you need to. Talking with friends, family, a counselor, or a member of the clergy about your feelings is a healthy way to relieve stress. DSI community groups offer social support to its families and serve as a means to disseminate up to date and accurate information to the families it serves.  Research indicates that, “social support is exceptionally important to maintaining good physical and psychological health…” (Ozbay, et al. 2008). Find out more about DSI Community groups at: http://www.dsindiana.org/CommunityGroups.php.

Tip #4: Volunteer

There are many health benefits to volunteering (Piliavin and Siegl 2007). If you feel that volunteering will take too much time away from your family, try volunteer activities that involve the entire family. Meals on Wheels and Kids Against Hunger offer fantastic volunteer opportunities for the whole family. You may feel that you're too busy to do these things, however, making time to do something you enjoy can help you relax. It might also help you get more done in other areas of your life.

Tip #5: Sign up for a Caregiver Retreat

 

You have probably seen the quaint, colorful and homelike building when driving in Broad Ripple near Keystone and 62^nd but like me may have never know it could be a resource to our families that have an adult with Down syndrome.  Joy’s House is an adult day service located at 2028 E. Broad Ripple Avenue in Indianapolis. The goal of this facility is to keep people aging in place, in other words,  to keep people living  in their homes as long as possible. Their mission is two-fold. One is to make sure guests have an active and enjoyable day. The other is to make sure caregivers get the support they need to keep their loved ones at home. In addition to the day services offered, Joy’s House is open four Saturdays per year for respite care and holds a free caregiver retreat twice per year. A face to face stress reduction workshop or caregiver retreat, such as the one at Joy’s House is a great way to effectively reduce stress (Hu 2010). For more information, contact: joyshouse.org or call 317-254-0828. You can also find them on Facebook and Twitter.

Love, Peace and Joy,

 

Lisa Wells, Executive Director


 

Groeneveld, M.G, et al. (2010) Stress, Cortisol and Well-being of Caregivers and Children in Home-based child care: A Case for Differential Susceptibility. Blackwell Publishing LTD. Retrieved from: http://web.ebscohost.com.ezproxy.uindy.edu/ehost/pdfviewer/pdfviewer?sid=81f7a2ed-7912-42ff-ad92-54f0445c4504%40sessionmgr111&vid=6&hid=108.

 

Hu, Jung et al. (2010) Effectiveness of a stress-relief initiative for primary caregivers of adolescents with intellectual disability. Journal of Intellectual & Developmental Disability, March 2010; 35(1): 29–35. Retrieved from: http://web.ebscohost.com.ezproxy.uindy.edu/ehost/pdfviewer/pdfviewer?sid=81f7a2ed-7912-42ff-ad92-54f0445c4504%40sessionmgr111&vid=8&hid=108.

 

Ozbay, F., et al. ( 2008 ) Social Support and Resilience to Stress Across the Life Span: A Neurobiologic Framework .  Current Psychiatry Reports. Retrieved from: http://link.springer.com/article/10.1007/s11920-008-0049-7#page-1.

 

Web MD. Stress Management – Effects of Stress. Retrieved from: http://www.webmd.com/balance/stress-management/stress-management-relieving-stress.

 

 

Whitebird, Robin, R. et al. (2012) Mindfulness Based Stress Reduction for Family Caregivers: A Randomized Controlled Trial. The Gerontologist Vol. 53, No. 4, 676–686doi:10.1093/geront/gns126. Retrieved from: http://ejournals.ebsco.com.ezproxy.uindy.edu/Direct.asp?AccessToken=9IQI5IJ8XD54DRPZ5J41KQ9EKR518I5I9Q&Show=Object.

 

Your Chance to win a signed set of Hunger Games Books

By Guest Blogger Greg Johnson

Catching Fire has just been released in theatres and 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

The Case for Community Groups

Down Syndrome Indiana offers several different community group options. They include:  Cuenta Conmigo (for Spanish speaking parents), DSI D.A.D.S., L.A.D.S.O., Mom’s Night Out, Mooresville, Self Advocates and the Wabash Valley Stars. But why do we offer these groups? Is it just for people to get together? Is it purely social? Sometimes I am asked these questions and when I am it breaks my heart. DSI’s community groups are at the heart of what we do. Anyone that participates regularly can tell you that. But why are they so important? I have found a few studies that I think will help to answer that question…

 

DSI community groups offer social support to its families and serve as a means to disseminate up to date and accurate information to the families it serves.  Research indicates that, “social support is exceptionally important to maintaining good physical and psychological health…” (Ozbay, et al. 2008)

 

 

There is research and personal testimony to support a community group, such as, DSI D.A.D.S.  having a positive impact on responsible fatherhood, a healthy marriage and even economic stability. For example, a study conducted by Frey, Fewell, Vadasy and Greenburg in Topics in Early Childhood Education, found that in, “Families in which a father has been actively involved in programs of support and resource enrichment concluded the entire family benefits from such participation. Fathers, and mothers, reported improved self-esteem; they experience significantly less stress and sadness. Families believed they had substantially fewer problems in dealing with their child with special needs. There also was a positive effect upon the fathers’ satisfaction with other familial supports. In follow up studies, these benefits appeared to endure over time, even when the father was no longer an active member of the program”.

 

 

Yet another study concluded that, “people with high levels of social participation and networks have healthier behaviors.” (Nieminen, et. Al 2013).

 

 

So there you go! Getting together in a DSI community group can help you stay healthier in mind and body.  

 

Dedicated to enhancing the lives of individuals with Down syndrome,

 

 
 

Lisa Wells, Executive Director

 

 

Nieminen, Tarja, et al . ( 2013) Social Capital, Health Behaviours and Health: A Population Based Study . BMC Public Health 2013 , 13:613 . Retrieved from: http://wwww.biomedcentral.com/1471-2458/13/613. 

 

Ozbay, F., et al. ( 2008 ) Social Support and Resilience to Stress Across the Life Span: A Neurobiologic Framework .  Current Psychiatry Reports. Retrieved from: http://link.springer.com/article/10.1007/s11920-008-0049-7#page-1.

 

Vadasy, Patricia F., et al . ( 1984 ) Siblings of Handicapped Children: A Developmental Perspective on Family Interactions . Family Relations. Jan1984, Vol. 33 Issue 1, p155. 13p.

 

 

 

 

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