Down Syndrome Indiana Launches Awareness Campaign

Down Syndrome Indiana (DSI), an Indianapolis-based not-for-profit that seeks to enhance the lives of people with Down syndrome, has 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, which is scheduled to run throughout 2013, will be primarily focused in the social media and will tell the stories of Hoosiers with Down syndrome through photos, videos, and text. Creative elements of the campaign will highlight the diversity of personalities, talents, and abilities representative of the Down syndrome community.
 

“Personal stories seem to resonate more with audiences than facts and statistics,” says Lisa Wells, Down Syndrome Indiana’s executive director. “We’re not trying to make people experts on Down syndrome, we just want them to see it in a different light. We want to break some of the more harmful stereotypes that sometimes prevent people with Down syndrome from reaching their full potential.”

According to Wells, the campaign’s success would help DSI fulfill its mission to promote the growth and inclusion of people with Down syndrome within their local communities. “I’m confident that once people get a behind-the-scenes glimpse into the lives of people with Down syndrome, they will be more likely to consider them as candidates for friendship, employment, and higher education opportunities.”

Even the Smallest Estate Requires Planning

January is Financial Wellness Month at DSI

 

Please welcome an article by Gordon Homes as he shares with us some helpful tips on estate planning for families that have a child with special needs...

 

Even the Smallest Estate Requires Smart Planning

 

Prepared by MetLife
 

Provided by Gordon Homes, CFP^®

Senior Financial Services Representative, Special Needs Financial Planner

Many people think estate planning is necessary only for those with significant assets; however, even the smallest estates require smart planning to protect family members with special needs.

In its simplest form, an estate plan helps ensure your wishes are carried out, should you be unable to do so. This protects your family from making tough decisions as well as ensuring that assets are divided in the way you would have wanted.

Below are 10 steps to help caregivers get started in preparing for the financial future of their dependent with special needs. Each circumstance is unique, so caregivers should consider their own situation carefully.

Plan for future medical, educational and housing needs for your dependent. Start by thinking about what your dependent’s needs will be in the future – and develop your financial strategy based on these projections. What medical needs will they have.  Will they need funds for job or technical training? Will they need supported living or functioning independently?

 

Review beneficiary designations. To maintain eligibility for government benefits such as Medicaid, a dependent’s assets must not exceed $2,000. Check with close friends and family to see if they have designated your dependent to receive any inheritance or insurance benefits from their estate– if they have, it’s important that they leave this to a special needs trust (see number eight on this list for information on trusts). Don’t let well‐intentioned friends and family unknowingly cause your dependent to lose access to valuable resources.

 

Have a family meeting to discuss your dependent's future needs. Just as caring for a dependent with special needs is a family affair, so is the related planning. With the thoughts that you have facilitated your dependent’s special needs throughout their life, meet with your family members to discuss their concerns and options for future care. This is also a good time to broach the beneficiary designation or inheritance issue discussed above.

 

Speak with a special needs financial professional and create a team of professionals to assist you in planning. Once you have determined the current and future financial needs of your dependent with special needs, it’s important to pull together a support team that can help guide you through the variety of options available to you and your family. The composition of the team may vary depending on your unique situation, but it should include a special needs financial planner, attorney, and perhaps a health professional and school guidance counselor.

 

Contact local nonprofit organizations for additional resource support. Your local nonprofit may be able to provide resources that can help with planning or that supplement the standard services provided by government agencies. A good starting place is to first contact a nonprofit dedicated to your dependent’s special needs.

 

Apply for government benefits. Government benefits – such as Medicaid and Social Security may help provide for your dependent’s needs in the form of medical treatments, supplies, equipment, respite, financial assistance and more. Reach out to the Bureau of Developmental Disabilities (BDDS) and/or Area Agency on Aging.  Contact Social Security to find out what benefits your dependent may qualify for, or visit their website (www.ssa.gov).

Prepare your Last Will and Testament (review and update periodically). A Will declares how you want your estate to be distributed and allows you to select a guardian for your dependents when you die.  It may be especially important to prevent automatic asset distributions directly to a person with special needs, and to be cognizant not to leave your dependent with special needs any assets in excess of $1,500 (as discussed in number two above.).  Referral to special needs attorneys is available upon request. 

 

Consider setting up a special needs trust. This allows caregivers a way to provide for their dependent’s care and quality of life, without disqualifying them for government benefits.  Trusts can be set up either funded or unfunded, and must be overseen by a trustee – often a family member, caregiver, pooled trust or bank trust officer. Funds can be contributed gradually over the years, or the trust can be designated as a beneficiary of an inheritance or life insurance. The money in the trust must be used to enhance the dependent with special needs quality of life, and can help to supplement standard services and benefits provided by government agencies. Speak to an attorney experienced in special needs planning for more information.

 

Apply for guardianship and conservatorship, if applicable. Caregivers must apply for a guardianship or conservatorship to maintain legal control over financial and healthcare decisions once a dependent reaches the age of 18. This can take several months, so it’s best to start this process early. There are different levels of guardianship and conservatorship available, depending on the dependent’s capabilities and needs. For example, a limited guardianship could be solely for financial or healthcare‐related decisions.

 

Prepare a Letter of Intent. Although not legally binding, this document is important for providing direction for the person or persons who will care for your dependent with special needs and should be stored with other vital documents, such as your Will. Think of it as a “letter to the caregiver” – it can cover day‐to‐day care routines such as what medical assistance is needed, as well as quality of life guidance such as what entertainment and activities should be provided.

 

Having an estate plan can help you achieve peace of mind and protect your family in the event that you are unable to make decisions. It can take the burden off of your family and help ensure that your wishes are carried out.

Gordon Homes is a Special Needs Financial Planner with the MetLife Center for Special Needs Planning, bringing a unique perspective as a Parent.  He assists families with estate and financial planning, legal and government benefit issues involved in having a dependent with special needs.  Gordon is nationally recognized, contributing to articles in the Washington Post, New York Times and Kiplinger’s Personal Finance.  Gordon is also a Down Syndrome Indiana Sponsor. He is available to speak at parent support group meetings throughout Indiana and Kentucky on topics ranging from the recent Medicaid Waiver changes, Special Needs Trusts, Guardianship and Social Security.  Gordon has offices in Indianapolis and Louisville.  He can be reached at (800) 903-6380 ext. 5042, (317) 567-2005 or ghomes@metlife.com.

IRS Circular 230 Notice: The information contained in this workshop is not intended to (and cannot) be used by anyone to avoid IRS penalties. This brochure may support the promotion and marketing of insurance products. Your clients should seek tax advice based on their particular circumstances from their independent tax advisors.  Metropolitan Life Insurance Company, 200 Park Avenue, New York, NY 10166.

Metropolitan Life Insurance Company(MLIC), New York, NY 10166.  Securities and investment advisory services offered through MetLife Securities, Inc.(MSI)(member FINRA/SIPC), a registered investment advisor.  635 Maryville Center Dr., Suite 200, St. Louis, MO 63141.  MLIC & MSI are MetLife companies. L1112289864[exp1013][IN]

Congratulations to the 2012 Star Award Winners!

Please join us in congratulating the recipients of the 2012 STAR Awards!

The first award goes to Kim Dodson. Kim is the Associate Executive Director for The Arc of Indiana. She has been involved in major changes in the disability field including the 317 Plan closing all state institutions for people with disabilities, better child restraint laws, and first responder training requirements. Currently she is working on a seclusion and restraint law to protect children in Indiana schools.   Kim is a passionate advocate for those with Down syndrome and a very active part of our community.  

 

The next award goes to: Angie Everton. Angie is a former Board member for DSI. She has a humble spirit and works tirelessly on behalf of DSI. Not only did she serve as Board Secretary, she is the Chair of the Parent Support and Education Committee, Southside Parent Group Chair, and the Helping Hands Chair. She has planned events for Down Syndrome Indiana in the past, and organizes Melaina’s Ride every year to benefit the Down Syndrome Indiana.  Thank you, Angie, for everything you do to enhance the lives of individuals with Down syndrome!

 

The third and final award of 2012 goes to: Jean Updike. She works closely with the Indiana Postsecondary Education Coalition to get local universities to offer a program for individuals with intellectual disabilities at their campus. She is determined to bring the disability community together and is the changing face of education in Indiana. We are forever grateful for everything she has accomplished so far and look forward to what the future holds!

 

A star was chosen to represent Down Syndrome Indiana for three reasons:

 

The first is Focus: Parents, siblings, educators, and other friends and family often describe individuals with Down syndrome as "the star of the show” or the center of attention. A star recognizes that quality, and reminds us of our need to challenge ourselves and society to see all individuals with Down syndrome for their contributions to their community.

The second is Achievement: A star has long been a symbol of achievement and reminds us of the importance of all "achievements" of individuals with Down syndrome.

The third reason is Inspiration: As a group of people familiar with the history of Down syndrome, we recognize that we are still at the beginning of our journey to discover the full potential of individuals with Down syndrome. The star represents our collective reaching for a brighter future for all individuals with Down syndrome.

 

 

 

Wishing you Joy, Peace and Prosperity in the New Year!

Happy Holidays from the Down Syndrome Indiana Staff...

DSI Annual Holiday Party - Let's Celebrate

2012 has been a successful year for Down Syndrome Indiana and we want to celebrate with our AMAZING families! 

Please join us at our Annual Holiday Party:

Friday, December 14^th, from 6pm to 10pm at The Atrium

(3143 E. Thompson Road, Indianapolis, IN 46227)

 

Festivities to include:
 

STAR Award Presentations, Delicious Dinner Buffet, Music and Dancing, Pictures with Santa Claus, Holiday Cookie Art, and a Photo Booth!
 

 

This event is provided with no cost to our families, though we do accept donations of office supplies.  US postage stamps and white copy paper are greatly appreciated.
 

 

Please RSVP to register@dsindiana.org if you and your loved ones plan to attend!

From the Desk of the Executive Director

November is about giving thanks. I would like to take a moment to thank the Down Syndrome Indiana staff Firany Briceno, Outreach Coordinator, Jessica Hadsell, Event Coordinator and Stephanie Glowner, Member Services Coordinator for their dedication to the mission of DSI and for working tirelessly on your behalf. If you see them at an event, talk to them on the phone or trade e-mails with them, please take a moment to thank Firany, Jessica and Stephanie for all they do for the organization.

 

I would also like to take a moment to thank the very dedicated team of interns and volunteers that are in the Down Syndrome Indiana office on a regular basis (i.e. weekly or more often) assisting the staff members with their workload. They are:

Angie Cain
Stephanie Carlisle
Jessica Green
Sarah Harris
Robin Hill
Dominique Lewis
Marty Mason
Clarinda Patterson
Joel Persinger
Katie Shaw
Ashley Smith

A huge thank you to the staff and volunteers for the diverse array of strengths, dedication and gifts to you bring to DSI on a daily basis. I am truly grateful and proud to call you part of the DSI family.

Warmest Regards,

Lisa Wells

Lisa Wells, Executive Director

NIH Establishes Ds Patient Registry

A new Down syndrome patient registry will facilitate contacts and information sharing among families, patients, researchers and parent groups. The National Institutes of Health has awarded a contract to PatientCrossroads to operate the registry. The company has created patient-centric registries for muscular dystrophy and many rare disorders.

People with Down syndrome or their family members will be able to enter contact information and health history in an online, secure, confidential database. Registry participants will be able to customize their profile, update it online, and choose which information they would like to display, including reminders about their own medical care and general information about Down syndrome. They also will be able to compare their own medical information to that of other registrants in a confidential and anonymous manner.

If a participant gives permission to be contacted, clinicians and researchers who are authorized to access the database will be able to contact these individuals to see if they are interested in participating in a research study.

Ultimately, the registry will be able to link to biorepositories of tissue samples and other resources, with the goal of making it easier for patients to take part in clinical studies for new medications and other treatments for Down syndrome.

The contract, which will support the creation of the registry through September 2013, received $300,000 in funding for its first year.

"The new registry provides an important resource to individuals with Down syndrome and their families," said Yvonne T. Maddox, deputy director of the NIH's Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), which is funding the registry. "The registry links those seeking volunteers for their research studies with those who most stand to benefit from the research."

Down syndrome most frequently results from an extra copy of chromosome 21 in the body’s cells. Infants with Down syndrome are likely to have certain physical characteristics, such as short stature and distinctive facial features, as well as health conditions like hearing loss, heart malformations, digestive problems, and vision disorders. Although Down syndrome most commonly results in mild to moderate intellectual disability, the condition occasionally involves severe intellectual disability. In addition, some individuals with Down syndrome age prematurely and may experience dementia, memory loss, or impaired judgment similar to that experienced by individuals with Alzheimer disease.

"Down syndrome is complex," Dr. Maddox said. "A wide array of scientific expertise is required to address all its aspects in a comprehensive manner."

Development of a patient registry was a leading recommendation in the 2007 NIH Down Syndrome Research Plan, which sets goals and objectives for the Down syndrome research field. Together with the Global Down Syndrome Foundation, the NICHD sponsored the Down syndrome National Conference on Patient Registries, Research Databases, and Biobanks to solicit the advice of a number of experts from the advocacy community, federal agencies, industry, and the clinical and research communities on how best to establish a Down syndrome registry.

The plan for the registry was supported by the public-private Down Syndrome Consortium, which was established by the NIH in 2011 to foster the exchange of information on Down syndrome research, and to implement and update the Research Plan. Membership on the Consortium includes individuals with Down syndrome and family members, representatives from prominent Down syndrome and pediatric organizations, and members of the NIH Down Syndrome Working group, an internal NIH group that coordinates NIH-supported Down syndrome research.

"We're grateful to those who provided us with the advice that allowed us to establish a national registry," Dr. Maddox said. "We are happy that this important step in furthering research on Down syndrome has been accomplished and hope that many families will take advantage of the opportunity to sign up as soon as the registry goes online."

About the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD): The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; intellectual and developmental disabilities; and medical rehabilitation. For more information, visit the Institute’s website at http://www.nichd.nih.gov/.

About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.