Down Syndrome Indiana: Executive Director's Blog

February is about Self Advocacy

2012-02-13T10:40:00.000-08:00

This month, I had the treat of visiting DSI Self Advocate, Katie Shaw on the job and speaking with her employer, Dave Collins about the fantastic work she does at his store. Katie has been employed by JC Penny for approximately 1 year and works at the Michigan Road location. Her typical day consists of checking the fitting rooms and back room and putting clothing back out on the floor neatly. As is always a must in retail, Katie is also responsible for greeting customers and serving them in an excellent fashion. When Dave was asked about Katie, he remarked that, “She sets a great example.” And he is often thanked by customers for employing her. He also added that she is one of his most, “punctual employees”. I am not surprised. When Katie was asked about her career at JC Penny’s, she answered, “I LOVE IT HERE!”.

Not only is Katie a valuable employee at JC Penny but she is also a very valuable volunteer in the Down syndrome Indiana office. Katie has donated almost 800 hours of her time to assisting DSI in a multitude of capacities but most of all she is my right hand (wo)man when it comes to volunteer coordination. Katie is active with her church, involved in a book club and will be visiting her legislators at the statehouse on Tuesday, February 14th as part of the Arc of Indiana’s Valentine’s for Legislators event.

Importance of Life Care Planning

2012-01-19T11:35:00.000-08:00

Planning for the Future: Life Care Planning is an Important Tool for Families with Special Needs

By: Kelley Stokesbary, CLCP, MSOTR/L
Stokesbary Life Care Planning
E-mail: stokesbarylifecareplanning@yahoo.com
Phone: (859) 396-5612

As the parent of a child with Down Syndrome, you understandably worry not only about meeting your child’s needs currently, but also in the event that something should happen to you rendering you incapable of providing care. Knowing exactly what those needs are currently, as well as in the future, can be difficult for a parent to determine. Are you doing everything you can to promote your child’s independence? What options are available for additional therapy services? Should I be consulting with specialists, and if so, whom? Where will my child go after high school? Will she be able to live on her own? Who will care for him after I am no longer able? Frequently parents simply do not have the time or the resources available to determine and plan for such needs in the face of daily care-giving. Fortunately, there are specially trained individuals known as Life Care Planners who are capable of helping you navigate through these difficult questions.

A Life Care Plan is a “dynamic document that provides an organized concise plan for current and future needs with associated costs” for individuals who have Special Needs (Source: International Academy of Life Care Planners). Basically, a Life Care Plan is a “roadmap” that promotes function, independence, and quality of life for an individual with Special Needs by outlining the medical needs and the financial burden associated with those needs. A complete Life Care Plan covers 18 categories ranging from physician and specialty appointments to therapy services to transportation and housing needs. It is very detailed and provides a clear look at what needs to be done, when it needs to be done, and why it needs to be done to promote the individual’s independence and quality of life. While the full Life Care Plan is the optimal choice, if desired, the Life Care Plan can be abbreviated to cover only those areas particularly concerning the parent – frequently the areas of education/vocation and home care vs. facility care. In a recent MetLife study, over 50% of parents of adult children with disabilities voiced concerns about their child’s living situation and finances after the parent’s death. Despite that, less than 50% of those parents had created a will, estate plan, or Special Needs Trust, and less than 10% had created a Life Care Plan. A Life Care Plan, when combined with a will, estate plan, and Special Needs Trust affords both the parents and the child with Special Needs peace of mind.

Life Care Planning is still a growing profession with only a handful of Certified Life Care Planners in the state of Indiana. In choosing a Life Care Planner, look for a health care professional who has experience with the Special Needs population. Consideration should also be given to the Life Care Planners professional background – are they still practicing in their prior healthcare profession or are they solely completing Life Care Plans? For example, hiring a Life Care Planner who is an Occupational Therapist and is still actively practicing Occupational Therapy ensures that the Planner is current with new theories and technologies. Choosing a Certified Life Care Planners versus a Life Care Planner who is not certified ensures that the Planner has met the national credentials and is held to a Code of Ethics and Standards of Conduct. Lastly, consider the cost – is the Life Care Planner charging an hourly rate or a flat fee? Both methods are commonly utilized, but if an hourly rate is being charged, ask for an estimate and a maximum fee amount. The cost for a Life Care Plan for a Special Needs individual typically is equivalent of having a will created.

Being proactive about developing a Life Care Plan certainly puts some work on your shoulders initially. However, not having one could mean more work, more stress, more problems to resolve, and more decisions to make under pressure – being reactive as situations arise again and again throughout life. So, take a deep breath, relax, and let a Life Care Planner help. For a complete listing of Certified Life Care Planners in Indiana, visit http://www.ichcc.org/clcp/directory.asp?w=1&l=17.

Life Care Goals

2012-01-18T05:49:00.000-08:00

How do I Develop Life Care Goals?

by guest blogger, Jim Cherco

Having a child with special needs presents many large and difficult challenges. Often families that have a child or children with special needs struggle with doubts and stresses about how best to raise and provide for their family now and in the future. If you are the parent of a child with special needs, the specialized care of your child is surely a very significant concern for you and your family. The job of devising a strategy for support that is ongoing and provides the long-term funding that is needed may be daunting enough that planning never gets started, much less, put in place. Have you considered who will care for your child in the event of your untimely death? Do you have a strategy in place for financing the care of your child as you (and your child) age? Perhaps, someone in your family has agreed to take over the care of your child when you are no longer able to do so. This can present its own challenges and stresses.

When I moved here to the Indianapolis area from Illinois back in 1989 I learned about the famous breaded tenderloin that is “as big as your head”. I asked a friend how on earth one goes about eating such a huge sandwich and he replied, “one bite at a time Jimmy”. I think you should approach your strategy for developing a life care goals are for your special needs child in much the same way. Take on one thing at a time and then move forward until your goals are complete, then review them annually and adjust it for the changes that life brings your way. Having a strategy in place can help to provide the quality of life you want for the child you love when you are no longer able to care for him or her. It will also give you the confidence you need, as a parent of a special needs child. The stress level you experience raising your child has been likened to that of a combat soldier, and can shorten your lifespan by up to 9 to 12 years. Having a strategy in place now to care for the future needs of your child can reduce some of your stress.

Fortunately there are programs that the government offers in addition to Special Needs Trusts (SNT) and Life Insurance that can provide options and funding for the ongoing care of a loved one with special needs. A combination of permanent whole life insurance and term insurance along with an SNT, is a great way to help provide financial care for your loved ones after you’re gone. While making sure that the funding is in place for a special needs child is important, permanent life insurance can provide much needed cash in an emergency.

Making it a priority to keep an updated will at all times that coordinates with an SNT is key to making your wishes known. Additionally, a letter denoting your detailed wishes can prove to be an invaluable asset. It can be a great supplement to the will and provide your designated caregiver/trustee detailed information regarding habits and routine, medical concerns, and parental wishes about living arrangements. Only you know your child best, and if you’re not around to care for him or her, the person who takes over may find it very difficult to figure out what your child’s idiosyncrasies are and it could cause your child undue stress. Keep in mind this is not a legal document but a helpful companion to the will and trust.
No matter how your life is affected by special needs, you need to have a plan in place. We realize that you may be too overwhelmed and don’t know where to begin. We can help you get started and see you through the process over the years. In addition, if you don’t have a support network in place, I would recommend contacting Down Syndrome Indiana or Easter Seals Crossroads.

Jim Cherco,
317-569-7621 jcherco@sfg-in.com.com www.specialneedsstrategies.com

As your personal situations change (i.e., marriage, birth of a child or job promotion), so will your life insurance needs. Care should be taken to ensure this product is suitable for your long-term life insurance needs. You should weigh any associated costs before making a purchase. Life insurance has fees and charges associated with it that include costs of insurance that vary with such characteristics of the insured as gender, health and age, and has additional charges for riders that customize a policy to fit your individual needs.

"Registered Representative of and securities offered through One America Securities, Inc., Member FINRA, SIPC, a Registered Investment Advisor, 11711 North Meridian Street #350, Carmel, IN 46032-9422(317) 569-7600 Insurance Representative of American United Life Insurance Company (AUL) and other insurance companies. Semler Financial Group, INC. is not an affiliate of OnaAmerica Securities or AUL and is not a broker dealer.

Tips for families with special needs

2012-01-10T05:29:00.000-08:00

Financial Planning Tips for Families with Special Needs by guest blogger Keven Clasen at WestPoint Financial...

Tips for families with special needs

Provided by Kevin Clasen, a Special Care Planner with WestPoint Financial Group, LLC, a MassMutual Agency; courtesy of Massachusetts Mutual Life Insurance Company (MassMutual)

What is the sign of a good decision?®
It’s creating a life care plan for a special needs child.
A gift of cash from grandma, grandpa or anyone else could end up costing special needs families thousands of dollars in lost government funding and services – benefits that are critical in helping families pay the huge expense of caring for and educating their children with special needs.
Assets over a certain dollar amount may affect qualification for government benefits.

Key considerations
Consider the following tips for families and friends of children with special needs.
1. Do not give or accept financial gifts or assistance in the name of a child with special needs.
2. Deposit gifts into a special needs trust that benefits the child.
3. Be aware: there is no difference between gifts of cash, bonds, stock, property, inheritance, annuities, art and automobiles; they all count against the child’s net worth.
4. Plan ahead: any of these gifts can legally be given to the trust of a child with special needs and will not jeopardize government benefits if the trust is properly drafted in compliance with any particular state’s requirements.
5. Carefully monitor the child’s assets. Interest appreciation could increase their account value to exceed the $2,000 limit.
6. Volunteer to help care for a special needs child, so parents or guardians can have some time to themselves. Caring full-time for children with special needs can be very intense, expensive and demanding.
7. If your child has special needs, create a “Letter of Intent” to document exactly how you want he or she to observe the holidays and with whom, if you pass away – what type of gifts should or should not be given to them and what kind of life they want. A “Letter of Intent” template is available at: www.massmutual.com/specialcare/resources.
8. Consult an attorney specializing in special needs planning with regard to the feasibility of establishing a Special Needs Trust and ask a financial professional for help funding the trust.
9. Review your life insurance, making sure the policy does not benefit the child directly; proceeds that are generally tax free may be paid into the child’s trust.
10. Offer to become a trustee, a very special personal gift to help families and children who need sincere, reliable, dedicated people to manage their children’s trusts and future.

Creating a special needs trust is the first step in creating a life care plan for a special needs child. This type of planning is crucial, yet highly complicated and difficult to do without help, because the issues and laws are complex. Services by an attorney specializing in special needs planning are essential. Your financial professional can help assemble an integrated team of professionals experienced in the area of special needs and, ultimately, assist in funding the trust.

© 2011 Massachusetts Mutual Life Insurance Company, Springfield, MA 01111-0001
Insurance products issued by Massachusetts Mutual Life Insurance Company (MassMutual),Springfield, MA 01111-0001 and its subsidiaries C.M. Life Insurance Company and MML Bay State Life Insurance Company, Enfield, CT 06082

The information provided is not written or intended as specific tax or legal advice and may not be relied on for purposes of avoiding any Federal tax penalties. MassMutual, its employees and representatives are not authorized to give tax or legal advice. Individuals are encouraged to seek advice from their own tax or legal counsel. CRN201301-143562

The Importance of Special Needs Planning

2012-01-05T05:24:00.000-08:00

Today's Guest Blogger is Gordon Homes, Special Needs Financial Planner and Parent with MetLife Center for Special Needs Planning to tell us more about the importance of special needs planning...

Caring for a dependent with special needs takes special planning.
Often we put off the task of planning as it can be overwhelming. This article will outline some of the steps you, with the assistance of a special needs financial planner and qualified attorney, should take to make their future more secure.

Letter of Intent

While the Letter of Intent is not a legal document, it is designed to serve as a roadmap for anyone involved with your child’s situation to utilize in understanding your child’s needs and your wishes for their future. This document is a working document, and serves as an ever changing caregiver’s guide, with everything from contact information for doctors,therapists, educators, government benefit offices, and providers, to medications, routines, schedules, food likes/dislikes, diet, etc.

Your Will

Addressing legalissues is a crucial step in planning for the future. Prepare a will if you don’t already have one or update your existing will to reflect what you want for your child. How do you want your estate to be distributed; who will be the guardian of your children? It may be especially important if you want to
limit assets going directly to a child with special needs. Without a will, generally state law will distribute assets to your children, including children with special needs.

Special Needs Trusts

Under current law, any inheritance of more than $2,000 ($1,500 limit for Indiana Medicaid) may disqualify individuals with disabilities from most federal needs based
assistance. A properly drafted Third Party Special Needs Trust (one set up and funded by a parent for example);however, may offer a means of protecting your child’s eligibility for these important benefits. Special needs trusts have evolved over the years, so an existing one may need to be updated. A special needs trust can typically be funded at any time with a gift or inheritance. If your child has or is in the process of receiving an inheritance, settlement, or back payment a First Party Special Needs Trust (one funded with the disabled individual’s money) may be needed. Having the correct type of special needs trust and engaging an attorney specializing in this area of the law is critical.

Guardian/Trustee

The guardian assumes responsibility for your child in the event of your death. Usually though not always, a family member will serve. There are two overarching questions the proposed guardian will be seeking to answer. How do I do this, and how will I pay for this? The planning process can help answer some of these types of
questions. The trustee oversees the assets in the trust. The guardian and
trustee can be the same or different people, each with a role in managing your
child, the money and the investments but all being involved and contributing to
their overall well being. Look at the options and decide what’s best for you and your family.

Financial

Sometimes sufficient financial resources to meet needs may not be available. The death of one or both parents can jeopardize your child’s financial future and quality of life. There are a variety of funding options for Special Needs Trusts. Discuss these options with a special needs financial planner and your attorney. What type of life do you envision for your child with special needs? How much money
will he/she need?

Gordon Homes, Special Needs Financial Planner and Parent
MetLife Center for Special Needs Planning
www.gordonhomes.metlife.com
(317)567-2005

MetLife and its representatives do not provide tax or
legal advice. Please consult your tax advisor or attorney for information regarding your own specific situation. Metropolitan Life Insurance Company (MLIC), New York, NY 10166. Securities products and investment advisorybservices offered by MetLife Securities, Inc. (MSI)(member FINRA/SIPC) a registered investment advisor. 545 Metro
Place So. Suite 175, Dublin, OH 43017. 614-792-1463. MLIC and MSI are
MetLife Companies. L1211229081[exp1112][IN]

Congratulations to the 2011 Star Award Winners

2011-12-14T05:33:00.001-08:00

Congratulations to the 2011 Star Award Winners!
Please join me in congratulating the 2011 recipients of the Down Syndrome Indiana Star Award!
The first award goes to Diane Knollman. Diane serves as a Special Education teacher in the Carmel School district and is the mother of Patrick, her 20 year old son with Down syndrome. The entire Knollman Family has been active with Special Olympics, Best Buddies and Down syndrome Indiana. Diane has been a developmental therapist, a tutor, a teacher, a mentor and a friend to many parents and students with a disability.

The next award goes to: Patricia Finkley – Patricia was chosen to receive the award for outstanding volunteer effort. She exemplifies commitment and servant leadership. Her dedication to the community around her is inspiring. For the past 5 years, Patricia has served Down Syndrome Indiana in an excellent manner and has helped wherever and whenever needed. Truly deserving of this award, the 2nd star award for 2011 goes to Patricia Finkley.

The third and final award of 2011 goes to Andi Montgomery – If there is any doubt that an airport can be a positive addition to the community, just look at what Indianapolis Executive Airport and Montgomery Aviation have done in the past five years for Down Syndrome Indiana. They have raised over $56,000 to enhance the lives of individuals with Down syndrome! This summer, they will continue their support with the 6th annual Fly-in on August 4th of 2012.

This year’s award is significant not only because of who the winners are but because the award itself was handmade by individuals with a disability, The Arc Artisans. A huge thank you to the Arc Artisans for making the arts more accessible to people with disabilities by engaging the power of the arts to use the abilities and accomplishments of these emerging artists to offer beauty and wonder to others in our community and beyond.

Most significant legislation in years.....

2011-11-30T06:10:00.000-08:00

Dear Down Syndrome Indiana Families,

Over the past 5 ½ years, I have had the pleasure of speaking with many of you about your hopes and dreams for your children whether they are newborns or adults. I know you want your children to grow up to live independently, have a meaningful career or go to college. The most frequent questions I hear are, “How am I going to pay for this?” and “How will saving affect my child’s benefits?” This is precisely why the ABLE Act is so important! It will allow you to save for the future needs of your child, such as, a college education or housing or transportation needs without negatively impacting the benefits they receive.

It takes a huge amount of effort to pass a piece of legislation. I was on Capitol Hill advocating for this ABLE Act in February 2009 and we are still trying to get it passed! Many others have been working on it longer. …. The point is your voice is needed now more than ever. Please contact your legislator today and encourage them to support the ABLE Act, also known as, the Achieving a Better Life Experience Act of 2011 (S. 1872/H.R. 3423). It isn’t hard, it’s not scary and you really do make a difference.

So often, when there is such a big and overwhelming issue such as this, we think that so many people are already participating in contacting their legislators that our own call or e-mail won’t make a difference but that’s not true. There really aren’t a lot of people stepping up to the plate to make this happen. An analogy…. I attend a huge and I mean HUGE church. One Sunday they asked for volunteers in their disability ministry and I thought, surely in a church this big, there are people just lining up to help out in this area so if I wait to sign up, I won’t be missed. But you know what? I was wrong! Out of the thousands of members, they still didn’t have enough volunteers to pair up one on one with children in Sunday school that needed extra support. Seriously?! It doesn’t take that many volunteers! (Yes, I signed up as soon as I found that out). It is the same with the ABLE Act, we think everyone else is calling in or writing but I assure you they are not.

I was on a conference call regarding this piece of legislation earlier this month and a long-time advocate and leader in the Down syndrome community said, “This is the most significant piece of legislation I have seen in years”. That is powerful when you have witnessed the growth in the disability movement throughout recent history, such as, the signing of the Individuals with Disabilities Education Act (IDEA), the Americans with Disabilities Act (ADA) and deinstitutionalization. In a speech given by Tom O’Neill at a Down Syndrome Indiana Annual Meeting in 2007, he said, “While the disability and the Down syndrome movement has come a long way, we haven’t yet arrived. We haven’t arrived at that place where we can sit back, admire our accomplishments, and rest on our laurels. While much as been accomplished, there are many challenges yet to address and the opportunities, too, remain many. The power in the Down syndrome movement- and there is power as we stick together and use it wisely – comes from our united strength”. So true. Let’s demonstrate our united strength and be a voice that cannot be ignored. So, again, please ask your legislator to support the ABLE Act.

Dedicated to enhancing the lives of individuals with Down syndrome,

Lisa Wells, Executive Director

P.S. Below you will find additional information.

ABLE ACT Webinar
In December , the National Down Syndrome Society(NDSS) webinar will be “ABLE Act 101 – Everything You Need to Know About the ABLE Act” on December 7th at 1pm Eastern.
The Achieving a Better Life Experience (ABLE) Act of 2011 (S. 1872/H.R. 3423) was just introduced in the 112th Congress in both the U.S. Senate and House of Representatives. When passed as a law, 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. During this webinar, you will learn the nuts and bolts about the ABLE Act and how you can take action to get the ABLE Act passed into law
Presenters:
John Ariale, Chief of Staff, Representative Ander Crenshaw (R-Florida)
Jennifer Debes, Legislative Assistant, Representative Ander Crenshaw (R-Florida)
Steve Beck, Parent; Board Member, National Down Syndrome Society; Board Member, Down Syndrome Association of Northern Virginia
Madeleine Will, Director, National Down Syndrome Society
Sara Weir, Senior Policy Advisory, National Down Syndrome Society
Slides from the presentation will be posted to www.ndss.org. During the webinar there will be time for Q and A.
Please register to attend this webinar. Seats are limited: https://www2.gotomeeting.com/register/608740234
You can read the full version of the bills here:

Senate - http://fifthfreedom.org/u/d0

House - http://fifthfreedom.org/u/d1

If this issue is important to you, you may wish to contact your representatives with your opinion. You can find contact information at http://fifthfreedom.org/findrep.php .

DSI Star Award Nominations

2011-11-29T06:31:00.000-08:00

To nominate an individual that has made a long-standing contribution to the Down syndrome community, please send your nomination to lisa@dsindiana.org. Three winners will be chosen and announced at the DSI Holiday Party on December 1oth.

Why a Star?

Focus: Parents, siblings, educators, and other friends and family often describe individuals with Down syndrome as "stars" or the center of attention. The star logo 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.

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

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.

A Noble Life

2011-11-23T07:50:00.000-08:00

The following is a speech given by Self Advocate and Down Syndrome Indiana board member, Jessica Green during a recent school presentation. She brought the teachers to tears and was encouraged to give her speech to more educators and students. If you are interested in having Jessica or a self advocate speak at your school, please contact the DSI office and we can help arrange it for you!

Good morning everyone!!

As you know, my name is Jessica Green.

I chose to title my speech today a noble life………..

I was born here in Indianapolis 28 years ago.

I am the first child of my parents, Steve and Lana Green.

I have a younger sister, Casey, and a younger brother, Michael, and my dog named Sofie.

When I was born, my parents were not only new to being parents but certainly new to know how to support a child who had Down syndrome.

Little did they know that raising me and loving me would be a piece of cake!

They took me home and followed the advise of my pediatrician which was….to treat me like they would any new baby and enjoy every moment.

My parents brought me home and then got busy researching and learning as much as they could about Down syndrome and what would be best for me.

They met some wonderful people at Noble of Indiana who gave them encouragement and strength.

They started realizing what a happy and full life I could have.

Boy were they right!

I am glad they didn’t listen to the professionals that were telling them not to set their expectations too high….

They learned terms like inclusion and normalization.

Inclusion means that every person, regardless of their challenges should be offered the same opportunities as their peers.

My parents thought being in the real world would be the best way for me to learn and make new friends.

So from preschool on, I was in typical classrooms with other children my age.

I attended my neighborhood school with my brother and sister and neighborhood friends.

This was a very new idea back in the 1980’s so it took quite a few meetings and discussions before it happened.

It also took some work by my mom and some very good teachers to adapt and modify some things so that my classes would be meaningful to me.

This not only helped me but quite a few other children in the classroom.

There were times when it was pretty hard but as my grandma smith says…”you can’t give up……if you fall or stumble you just have to keep getting back up and try again….

All of the experiences that I have had—good and bad—have made me the person that I am today.

We all deserve the dignity of being allowed to try!!
Sometimes I succeed and sometimes I don’t—just like anyone else.

I had a very busy time during my school years, not only taking classes, but attending extracurricular activities like dancing and performing with the theatre of inclusion, volunteering for the Humane Society, and eventually working for Barnes & Noble, Eddie Bauer, and two different advertising agencies.

After I graduated, I was able to fulfill one of my dreams……..to go to college….
I attended Marian University here in Indianapolis, and it was great!!

I hung out on campus and went to dances and sporting events and oh!! yes!! I took classes too… ha ha ha…

I took dance, choir, stage production, volleyball and nutrition.

After college I started working for a company…..Advantage Medical in Carmel, Indiana. I was there for 8 years. They were recently bought by a larger company and my position was outsourced, so I had to look for a new job. I am now working at Petco in Carmel as a grooming assistant. I love dogs and really wanted to work with them, so I am very happy.

One of the things that I am most proud of is being a self advocate. I am on the board of Down Syndrome Indiana and also in the National Down Syndrome Congress. I am so proud of representing people who have Down syndrome. I love meeting families of younger children and giving them hope and encouragement for their child’s future. I encourage them to think out of the box and push the envelope.
You really don’t know what a person can do until you give them a chance to try!!

I have testified and spoken on behalf of the issues that individuals who have challenges face. I have done this here in Indianapolis and also in Washington D.C.

It is important that the people who are in charge of making the laws know firsthand what is important to us and that we feel we deserve the same rights and privileges as everyone else.

After all…..

I pay taxes, I pay rent, I vote and believe I deserve a voice like anyone else.

I even wrote the governor a few years ago to ask if crosswalk signs could be put up at the intersection where I live. I wanted to be able to safely walk across the street to my neighborhood stores and bank. I couldn’t believe that he read my letter and they were actually installed. I am proud of this because I know it not only helped me be more independent, but I know it helped other people as well.

In August 2010, I achieved another lifelong goal!! I moved into my first apartment!!

I am still learning what it means to be our on my own and making my own decisions. I am learning about making healthy and safe choices, about budget, cooking and everything that comes with living independently. I think this has been harder for my mom and dad than me.

I am really enjoying the freedom and the experience so far.

Well, I will close by reminding all of you that at the end of every rainbow there is a pot of gold. That is the message I would like to leave you with today.

Never give up!!

Teachers and administrators please allow all of your students to fulfill their dreams. Offer them a supportive and positive environment so that they will have an opportunity to reach their full potential.

Somewhere over the rainbow dreams can come true and everyone should be allowed to try to reach their pot of gold.

Thank you so much for having me here today. Go out and make it a wonderful day!!

Buddy Walk(R) - A day to celebrate

2011-09-22T11:22:00.000-07:00

A Poem About Buddy Walk(R) by Guest Blogger Jessica Green

A DAY TO CELEBRATE
A TIME TO SHARE
FAMILIES AND FRIENDS
GATHER FROM HERE AND THERE

SUN THAT'S BRIGHT
HEARTS THAT ARE FULL
LOVE FROM PEOPLE THAT
SURROUND YOU.

A TIME OF GIVING
WHATEVER YOU CAN
STAND UP AND SPEAK OUT
AND SUPPORT DOWN SYNDROME

MAKE A DIFFERENCE IF YOU CAN
HELP DSI AND ALL THEIR FRIENDS
COME TO WALK FOR A GOOD CAUSE
THEN YOU GET A BIG APPLAUSE!

-BY JESSICA GREEN

Fly in/Drive In - Open House

2011-07-16T08:21:00.000-07:00

Airplanes, skydiving, good food and family fun are all part of the Fifth Annual
Fly In/Drive In - Open House at Indianapolis Executive Airport.

Admission and parking are absolutely free. Prots from food or refreshments
will go toward helping Down Syndrome families throughout Indiana. Since
2007, Indy Exec and Montgomery Aviation have raised more than $45,000 for
Down Syndrome Indiana.

And this year there is something new. Rolls Royce has joined our team of
sponsors with a unique event display and an extremely generous contribution.
For every visitor to the Open House, Rolls Royce will donate one dollar to
Down Syndrome Indiana.

And that’s not all! Airport visitors will have the opportunity to see the only
Redbird FMX -ight simulator in public use in all of Indiana! Pilots and -ight
students -y all sorts of aircraft simulating all conditions without ever leaving
the ground. You will want to see this demonstration!

Saturday, August 6th 10AM - 2PM
Indianapolis Executive Airport
11329 East SR 32, Zionsville, IN 46077
3 miles east of US 421 / 6 miles west of US 31

Contacts:
Andi Montgomery
Indy Exec
317.769.4487

Claire Chappell
Rolls-Royce
317.230.5833

Lisa Tokarz-Gutierrez
Down Syndrome Indiana
317.313.9615

College can be an Option!

2011-07-05T06:35:00.000-07:00

New Website Encourages College as an Option for Children with an Intellectual Disability

The Indiana Postsecondary Education Coalition recently launched a website to inspire families of young children with an intellectual disability to consider college as an option available to their child when (s)he graduates high school. The website is www.thinkcollegeindiana.org. Now, families, educators and employers have a resource that emphasizes the value of a college life experience for ALL.

The goal of the coalition and the website is to begin to tear down the barriers that have excluded students with intellectual disabilities from the experiences of college. The coalition believes that individuals with an intellectual disability can and should have the opportunity to gain meaningful employment that includes a full-time career , a living wage and insurance benefits if they so choose. In fact, the Indiana Postsecondary Education Coalition envisions a world in which young adults with intellectual disabilities have the option of electing college as part of their planning as they transition from high school to the adult world. A college experience, which can include, academic, social and vocational components is really about providing opportunities to gain knowledge and skills that can change a life of dependence to one of independence and productive work!

“ Currently the only known college in Indiana that offers a program for individuals with a developmental disability is IUPUI and we are so grateful for the work that Pat Rogan is doing there! Now, we want more opportunities for students with an intellectual disability to experience college and the launch of this website is just one more step in creating the awareness needed for a more inclusive society for all.” Said Lisa Tokarz-Gutierrez, Executive Director of Down Syndrome Indiana, one of the organizations active in the coalition.

About the Postsecondary Education Coalition

The Indiana Postsecondary Education Coalition is a statewide effort of advocacy organizations including Down Syndrome Indiana (DSI), the ARC of Indiana, the Autism Society of Indiana (ASI), Goodwill, the Indiana Institute on Disability and Community at Indiana University, IUPUI, the National Down Syndrome Society, Passages, Inc., and of course parents, educators and self advocates promoting postsecondary education (college) options for students with a developmental disability.

It is important to note that this is a long-term process. It may take years to make this a widely accepted option but the good news is there is a team in place that is ready to stick with it for however long it may take. For more information on the Indiana Postsecondary Education Coalition, please visit www.thinkcollegeindiana.org.

Action Alert!

2011-04-16T11:52:00.000-07:00

Action Alert The following laws, rules and civil rights are in place for our loved ones with a disability: the Americans with Disabilities Act (ADA), a free a appropriate education (FAPE), a guarantee of an education in the least restrictive environment (LRE) and Individualized Education Programs (IEP), the Individuals with Disabilities Education Act (IDEA) and the procedural safeguards it provides, such as, due process hearings. Did you know that if you accept a voucher for your child with Down syndrome to attend a nonpublic school, you could be giving up these rights? According to the Arc of Indiana, this bill, HB 1003 the School Scholarships Bill, was voted out of the Senate Education committee this week and will be eligible for amendments and a vote during the week of April 18th in the Indiana Senate. Well, that sounds harmless, a bill that encourages scholarships to low income students to pay the cost of tuition, right? WRONG! WRONG! WRONG! The Down Syndrome Indiana Public Policy Committee encourages families to oppose this bill altogether. And here is why… Reasons to Oppose HB 1003 – the School Scholarships Bill If you have a child with a disability and you accept a voucher… 1. An IEP (Individualized Education Program) is no longer guaranteed; 2. You just opted out of procedural protections; 3. Due process – gone; it’s no longer guaranteed; 4. Mediation – nope, not anymore; it’s no longer guaranteed; 5. In fact, the safeguards provided under IDEA altogether are no longer guaranteed; 6. No guarantee of a Free and Appropriate Education (FAPE) either; 7. No guarantee of transportation any longer; 8. If this passes as is, schools that accept vouchers won’t even need to be compliant with the Americans with Disabilities Act (ADA). If schools receive public funding then they should have to comply with civil rights laws. Please contact your local legislators right away and let them know how you feel! You can write to your legislator at: (Insert their name here) State House 200 West Washington Street Indianapolis, IN 46204 If you don’t know who your legislator is, you can find them through this website: http://www.in.gov/legislative/legislators/.

Public Mass Transit

2011-04-02T09:59:00.000-07:00

Contact your state legislator and ask them to restore funding for the Public Mass Transit Fund in Indiana’s state budget. Access to safe and affordable public transportation is an essential service for maximizing independent living opportunities for individuals with Down syndrome. Down Syndrome Indiana believes that public transportation options must increase throughout the state. A great disparity exists between urban populations and less populated suburban and rural populations. This disparity results in limiting social, recreational, educational and employment opportunities for individuals with Down syndrome in geographic areas where public transportation is limited or unavailable. This may also have the affect of forcing individuals with Down syndrome to choose housing and employment options in areas where public transportation is available, but not where they would otherwise choose to live or work. Further, limited public transportation may result in individuals with Down syndrome forgoing wellness programming and needed medical services. You can write to your legislator at: (Insert their name here) State House 200 West Washington Street Indianapolis, IN 46204 If you don’t know who your legislator is, you can find them through this website: http://www.in.gov/legislative/legislators/.

The Runway of Life

2011-03-25T10:46:00.000-07:00

Katie may have Down syndrome but it doesn’t define who she is…..

On Saturday, March 19, 2011 Katie Shaw gave a wonderful speech at the Down Syndrome Indiana Fashion Show presented by Midwest Fashion Week. Click here to listen to what she has to say about the runway of life: http://www.youtube.com/watch?v=pXsxikw6J3w

Meet the Children's Show Models....

2011-03-08T09:47:00.000-08:00

The Children’s Fashion Show is only 5 days away! Join Down Syndrome Indiana and Midwest Fashion Week as we celebrate the joy of being a child through a colorful presentation of contemporary children’s fashion. This fun-filled event for families and friends includes an
elegant Sunday brunch, inclusive fashion show, opportunity to create positive public awareness about Down syndrome and closing entertainment by Colts Mascot, Blue! Tickets are $25.00 per adult and $15.00 per child and are still available at: www.dsindiana.org. Now, let’s meet our models! ..

Name: Karinne Lee
Fun Facts about Karinne: Karinne Lee is 8 years old and is in 2nd grade at St. Matthew Catholic School. She loves to sing, dance, perform for others, and everything pink. She has performed in several dance recitals doing ballet, and currently is in stomp. Karinne also does cheerleading with Special Olympics and Girl Scouts. She has 2 sisters, Micah and Reagan.

Name: Michaela Deputy
Fun Facts about Michaela: Michaela lives in Indianapolis with her dad, mom, brother, two dogs, and a cat. She is 13 years old and is in the 7th grade at Christel House Academy, where she is stu-dent manager for the volleyball team. Michaela is a fighter, having survived open heart surgery at 10 months old and leukemia at 7 years old. She loves Barbies, American Girl dolls, princesses, playing Wii, swimming, and sledding. She attends The Creek and helps in the Scrapyard Sunday school class and is also active in the middle school life group. She is a busy volunteer with the Leu-kemia and Lymphoma Society and Riley Children’s Foundation. Michaela is anxiously awaiting a November mission trip to Nicaragua with her mom to serve in a special-needs school for a week.

Name: Mackenzie Wilt
Fun Facts about Mackenzie: Mackenzie Wilt is excited to be a part of the fashion show this year. She is ten years old and attends Mohawk Trails Ele-mentary School. She is in 4th grade and loves going to school. Mackenzie enjoys cheerleading and swimming and loves to play with her friends and siblings. Currently she is practicing for her 4th grade musical in which she will be singing a solo and acting as an IU cheerleader. At home she loves arts and crafts, Barbies, Polly Pockets, movies and playing video games. She is a huge help around the house and always has a clean room!

Name: Sydney Pequignot
Fun Facts about Sydney: Sydney lives in NE Indiana with her Mom Denise, Dad Chad, big brother Seth and dog, Maggie. She attends Little Turtle Elementary and is in the 2nd grade. She loves to read & swim. Her activities include Cheer, Lap club (a swim team for special needs) and attends Camp Red Cedar during the summer where she rides horses.

Name: Aurora Lynn Ellis
Fun Facts about Aurora: Aurora is a kindergartner at Mill Creek West Ele-mentary in Amo, Indiana. She enjoys playing with her two brothers, Wyatt 9 and Sawyer 3. She also spends time visit-ing with her friends. Aurora loves cheer-leading, and is a member of the Elite Cheer and Dance Special Needs Team. She performs at lo-cal competitions. Another one of Aurora's favorite pastimes is dancing! She is a great shopper and loves to get new clothes! She has partici-pated in the DSI Buddy Walk since she has been six weeks old.

Name: Mia Francesca Accinelli
Fun facts about Mia: She is a daddy's girl. She loves to watch to Spongebob and Word World. Her favorite phrases are, "No way!" and "Duh!" She figured out her mom's iPod Touch before her mom did and frequently says it's hers. We call her "Itty bitty" because she's so tiny. She loves going to school. She is a wonder-ful helper. She helps anyone, anywhere.

Name: Madison Collins
Fun Facts about Madison: Madison is in 6th grade at Childs Elemen-tary in Bloomington, IN and lives with her mom and dad and her older sister in high school. She has 2 older brothers living out of state . She enjoys the computer and playing many sports e,g, basketball, soccer, swimming, dance, bowling, riding her bike. She is very creative and enjoys designing, coloring and cutting decorations her room . Madi-son is very social, likes being around other people and has a good sense of humor . Her favorite color is purple. She thoroughly enjoys singing and dancing to Hannah Montana and the Jonas Brothers .

Name: Name: Taylor Collins
Fun Facts about Taylor : Taylor is a 7 year old Fabulous First-grader. Everyday is a holiday for this Little Princess. She enjoys dancing, sing-ing and the spotlight! Taylor brings joy and love into our lives daily as there is never a dull moment when the Diva is on deck!

Name: Hallie Creason
Fun Facts about Hallie: Hallie is 7 years old and in the first grade. She enjoys swimming, gymnastics, and attending church activities. Hallie loves books, playing with friends, and watching Han-nah Montana. She also enjoys visits with her grandmas and grandpas and loves her big brother Kyle.

Name: Joshua Graham
No bio available at this time.

Marissa Schneck:
No photo/bio available at this time.

Name: Evan Marcus Sondgerath
Fun Facts about Evan : Evan is currently ten years old. He has three sisters, Erin, Emily and Nicole (deceased 7/16/99). Evan enjoys participating on the Conductors Cheerleading Team at Cheer Ex-press. He is currently taking swimming lessons twice a week. Evan participated in Boy Scouts for two years and enjoyed playing soccer on a recrea-tional team for three seasons. He enjoys music, dancing and playing dress-up. Evan is loving and caring but also very comical.

Name: Ben Scofield

Name: Katie Rogers
No photo/bio available at this time.

Action Alert

2011-03-02T12:09:00.001-08:00

Please take action now!

The National Down Syndrome Society has issued an action alert regarding funding for postsecondary education programs for students with intellectual disabilities at this link:
http://capwiz.com/ndss/issues/alert/?alertid=32315501&queueid=6554673811

This issue is near and dear to the mission of Down Syndrome Indiana! As many of you know, DSI has been a part of the Indiana Postsecondary Education Coalition and the progress made to date is nothing short of amazing thanks to a grant from the US Department of Education but a funding cut in this area could slow progress dramatically! “This week the funding for that grant and all the other grants and initiatives face potential elimination from the federal budget. The Republican plan, the continuing resolution and the President’s Budget currently threaten to zero out these items. Our children have 3 times as much success gaining meaningful employment after completing one of these programs versus not attending. We have made too much progress to let this slip away….” Says Jeff Huffman, Chair of the Public Policy Committee in the Indiana Postsecondary Education Coalition and parent of Nash, who happens to have Down syndrome.
Please contact your congressional representative and ask them to support funding to continue the Transition Programs for Students with Intellectual Disabilities into Higher Education (TPSID) and the TPSID National Coordinating Center by the Office of Postsecondary Education in the U.S. Department of Education. These demonstration projects are developing models of effective ways to ensure that students with intellectual disabilities have access to postsecondary education and increased employment outcomes. These programs should be protected and supported in the FY 2011 and FY 2012 funding bills.If calling by phone, use the Capitol Switchboard at 202-224-3121 and ask for the office of your Members.

It’s okay if you don’t know who your member of congress is or can’t find their contact info: Just go here:
http://capwiz.com/ndss/home/
On the right side type in your zip code and look them up.

Again, for more information, please visit this link:
http://capwiz.com/ndss/issues/alert/?alertid=32315501&queueid=6554673811

Dedicated to enhancing the lives of individuals with Down syndrome,

Lisa Tokarz-Gutierrez, Executive Director

Arc Artisans

2011-02-26T10:42:00.000-08:00

Let’s close out February, the month where DSI emphasized Self Advocacy with a brief article about the Arc Artisans. I visited their art workshop last month and as many of you know, I have several pieces of their artwork and am a huge fan of the work they do!

Arc Artisans is an entrepreneurial program where emerging artists at Arc Rehab Services and professional artists from the Central Indiana community come together to create artwork and develop skills in creative expression, craftsmanship and small business management. Artists are active in all areas of design, production and marketing. All proceeds from the sale of artwork go directly back into the program.

The Artisans have quite a few things on their plate right now. For one, they are hosting their first art show from March 3rd to March 25th at Sugar Creek Art Center. More information on this can be found on their Facebook page. In addition, they are beginning to make items from old sweaters. If you would like to donate gently used sweaters to their program, you can send them to Arc Services, c/o Arc Artisans, 900 West Main Street, Lebanon, IN 46052.

Arc Artisans is happy to take special orders for custom pieces and commissioned artwork. You can visit their website at www.arcartisans.org or you can call 765-482-6815 ext. 103.
You will be able to find artwork by the artisans in the silent auction during the Down Syndrome Indiana Fashion Show Gala on Saturday March 19th, 2011, as well as, at the Fly-in at Indianapolis Executive Airport on August 6th. And guess who will be designing and manufacturing the 2011 Down Syndrome Indiana Star Awards? You guessed it! The artisans!

Guest Blogger Katie Shaw talks about her education

2011-02-17T12:53:00.000-08:00

I would like to introduce you to guest blogger, Katie Shaw. She is going to tell you about her education and what it means to her....

My Education by guest blogger Katie Shaw

My education is important to me because I have and will have all of my education. I have my certificate of completion and my CDA eventually I will have my GED.

First, I graduated at Pike High School in 2004 with a certificate of completion. This requires to meet the core 40 and to pass part of the math.

Second, I went to Ivy Tech and I got my CDA. I had to take early childhood classes. When you know the stuff it is easy.

Third, right now I am working on my GED. When you start you take an entrance exam to see where you are at then the teacher helps you with your skills.

All and all, when I have my certificate of completion, CDA and my GED that will help me get a job and do what I want to do with my life.

Prenatal Testing

2011-02-12T16:22:00.000-08:00

Did you know?

· 1 out of every 691 babies born is born with Down syndrome;
· There has been a 15% decrease in the births of babies with Down syndrome between 1989 and 2005;
· Currently more babies with Down syndrome are aborted than are actually born;
· Yet, there is a waiting list of over 250 families that want to adopt a child with Down syndrome…

As early as the fall of 2011, there could be a blood test on the market that would detect Down syndrome within the first trimester of pregnancy. Of those women who receive a prenatal diagnosis, about 82% of them will choose to terminate the pregnancy. Why?
It very well may be due to a lack of current information about the rich lives that individuals with an intellectual disability, such as Down syndrome, can and do lead. For example, studies have shown that some parents choose to continue a pregnancy over termination because of positive images and stories about people with Down syndrome or because of conversations with parents of children with Down syndrome.

The lack of information provided is recognized by more than just the medical community as evidenced by the passage of the Prenatally and Postnatally Diagnosed Conditions Awareness Act and the American College of Obstetrics and Gynecology (ACOG) Practice Bulletin No. 88, which both call for the provision of up to date and current information about Down syndrome and referral to a support group when the diagnosis of Down syndrome is made.

As a local support group whose mission is to enhance the lives of individuals with Down syndrome, Down Syndrome Indiana’s Outreach Program strives to build relationships with the medical community through positive interactions and encourages medical personnel to distribute up to date and accurate information about Down syndrome to the families they serve. This is a pro-information movement whose time has come.

Most importantly, we as a community need to showcase our loved ones with Down syndrome. We need everyone to see the value that each brings to their home, family, place of work and their community. We need to reach outside of just families with Down syndrome to recruit those who believe in inclusion not only because they have a child but because it is a value that they hold dear. These people are out there. I speak with them every day.

If you want to be a part of sharing positive information about Down syndrome or would like to volunteer, please visit our website at www.dsindiana.org or call 925-7617 today!

Oh and prepare to be….inspired!

Lisa Tokarz-Gutierrez, Executive Director
Down Syndrome Indiana

Think College!

2011-02-09T05:59:00.000-08:00

Book Review: Think College!
Postsecondary Education Options for Students with Intellectual Disabilities
Author: Meg Grigal & Debra Hart Foreword by Madeleine Will

As more and more students with intellectual disabilities "think college," high schools and postsecondary schools must be fully prepared to meet their needs. Developed by two highly respected experts, this book uncovers the big picture of postsecondary education (PSE) options and reveals how to support students with disabilities before, during, and after a successful transition to college.

A critical resource for education professionals to read and share with families, Think College! helps readers to:
• Understand the philosophical and practical purposes and potential outcomes of supporting students with intellectual disabilities to access PSE
• Explore the three current models for PSE: the inclusive individual support approach, the mixed hybrid approach, and substantially separate options
• Overcome the common challenges to PSE for students with intellectual disabilities
• Plan effective, person-centered transition services for high-school students
• Support students as they manage the practical aspects of a positive PSE experience
• Connect students’ PSE experiences directly to employment and other life goals.

With this thorough guide to today’s PSE options and tomorrow’s possibilities, professionals will help students with intellectual disabilities take full advantage of their educational opportunities – and set the stage for successful, fulfilling community lives.

This book is available to check out from the DSI Lending Library. For more information about the Lending Library or to check out this book please contact Rachel Wood by e-mail at rachel@dsindiana.org or by phone at 317.925.7617.

Meet Sarah....

2011-02-04T07:37:00.001-08:00

Taking pride in her work:
Sarah’s job brings independence and fulfillment

Sarah Schelstraete is proud of her job, and rightfully so. You can hear it in her voice when she talks about her day-to-day work at Underwriters Laboratories, a product-safety testing company in South Bend, Ind.

Sarah, a 36-year-old woman with Down syndrome, landed her job at Underwriters when she was just a high school student. Now in her 17th year on the job, Sarah has successfully maintained her employment thanks to her outstanding work ethic, positive attitude and pure dedication.

“I love my job!” Sarah said. “It’s very important to me.”

Sarah works five days a week and is responsible for various tasks that keep the company operating smoothly, including helping with shipping, cleaning and storing materials.

“She is probably one of our most dependable employees. She has a perfect attendance record,” said Donna Martis, Sarah’s supervisor, in an interview with WSBT-TV in South Bend.

In addition to a steady income, Sarah receives health benefits and an IRA (Individual Retirement Arrangement) through her employer.

“The ways this job has benefited Sarah are innumerable,” said Myrna Schelstraete, Sarah’s mom. “One of the biggest advantages is that she’s accepted by everyone she works with. Nobody treats her differently or gives her special privileges. She’s just like everyone else.”

As the fourth of five children, with two brothers and two sisters, Sarah grew up feeling like every other kid. “Her brothers didn’t let her get by with any special treatment!” Myrna said. “She had to hold her own, and she’s still good at that.”

Myrna is proud of her daughter’s independence and maturity, particularly in how she handles her work duties. She describes Sarah as being very smart, regimented and organized – all valuable qualities that are important to most employers.

“Sarah can do all the things that anyone else can do,” Myrna said. “It may take her a little longer to learn how to do some things, but she never forgets.” Sarah rides the city bus to and from work each day and packs her own lunches, too.

For other parents of children with disabilities, Myrna recommends they help their kids grow up to be excellent employees by teaching them to be well-mannered and responsible. She also suggests that parents think outside the box when helping their children with disabilities find employment. Rather than limiting your search to common places like restaurants and grocery stores, consider places that you do business with every day, such as doctor’s offices, hospitals and libraries.

“It’s a shame that most people don’t realize how many abilities people with disabilities do have,” Myrna said. “Unfortunately, many people think individuals with disabilities are limited to jobs you most typically see them in, such as working for fast food chains, but there are so many other options if you just look for them.”

In addition to her work, Sarah enjoys all kinds of activities and hobbies, including bowling, playing basketball, being outdoors and everything to do with music, including karaoke. She loves watching movies and spending time with friends, too.

“Sarah is a very well-rounded person with many skills and abilities,” Myrna said. “People with disabilities, like Sarah, just need a chance to show what they can do.”

Sarah’s story is an excellent reminder that people with disabilities, with the right support, can be valuable and productive employees. But this story isn’t just about inclusion; it’s also about empowerment. Not only is Sarah a respected employee, she’s earning a paycheck. She’s deciding what goods and services to buy, or not buy, and that is real power as a consumer.

(Reprinted with permission from the Indiana Governor’s Council for People with Disabilities)

Mark to Drive a Car!

2011-02-03T07:47:00.000-08:00

I just love this story and am reprinting it with permission from Self Advocate’s of Indiana….

Mark Hublar has never let Down syndrome hold him back. Recently he began driving a car.

The 46 year old New Albany resident and Board Member of Self Advocates of Indiana as well as a member of Self Advocates of Southern Indiana, got his learner’s permit in October and will soon take his driver’s license test. In recognition of Mark’s efforts, the local Maaco Collision Repair & Auto Painting Center painted his 1998 Toyota at no charge.

Mark had been riding his scooter to his job at Wal-Mart and now can drive a great-looking car. “I’ve known Mark’s family a long time and wanted to support his efforts, which are such an inspiration to me and many other people in the area,” Terry Bird of Maaco said.

Mark said, “I always wanted to have my own car so mom gave me her car. I wanted it to look nice so I took it to my buddy Terry to paint it. He did a great job and said it was free. He is my buddy and I am going to give him a ride when I get my license.”

Mark serves on SAI’s Board of Directors as an appointed At-Large member. This article contains information that appeared in a Maaco press release from December 1, 2010.

P.S. For those of you who do not know Mark, he was the winner of a 2008 Down Syndrome Indiana Star Award. Go Mark! For more amazing stories about what our advocates are accomplishing, please plan on attending the Parent Network Meeting on Tuesday, February 22nd at St. Luke’s United Methodist Church in Indianapolis, IN from 6pm to 8pm.

Prepare to be inspired…

Lisa Tokarz-Gutierrez
Executive Director
2625 N. Meridian Street, #49 Indianapolis, IN 46208
317-925-7617 Office
317-313-9615 Cell
317-925-7619 Fax

Help train doctors of today and tomorrow

2011-01-26T11:30:00.000-08:00

In a recent article by Dr. Brian Skotko, entitled “ Understanding the implications of prenatal testing for Down syndrome “, he calls on the medical community to, “ Train not only the doctors of today but the doctors of tomorrow. Medical students, nurses and genetic counselors should be educated beyond the textbook and have interactions with people who have Down syndrome so that they may better understand the realities of living with the disorder. “

As we all know, it takes time to build trust and relationships. At Down Syndrome Indiana, we strive to be the local resource for families and medical professionals to contact whenever they have a question about Down syndrome or are looking for resources and support. We will continue to build positive relationships with medical professionals so they can see just how valuable the lives of individuals with Down syndrome are to the community.

You can help medical personnel by assisting local doctor Katie Weber with the project below:

Dear DSI Self-Advocate and Family:

I am writing this letter to ask you to help with a project I have
started. The project is to teach doctors how to take better care of
their patients with intellectual disabilities. I believe that
self-advocates and their families are some of the best teachers. I
would love to have the best help possible!

One of the ways I would like to teach the doctors is by having them
practice in a classroom that looks like a doctor’s office. In this
classroom, actors pretend to be patients so the doctors can practice
their doctor skills. I am asking if you would like to be an actor in
this classroom. It will mean coming to the classroom at least twice.
The first time will be practice for you. You will see what the
classroom is like. You will learn how to act like a patient in the
classroom. We will practice the kinds of questions the doctors will
ask and how you should answer them. We can have extra practice for
you if we decide this is needed. The second time will be practice for
the doctors. This time, you will spend 2 hours acting as a patient
for 4 different groups of doctors. They will ask you questions and
you will answer like we practiced. After each group of doctors, you
will have the chance to tell them how they did. I would like you to
tell the doctors if you could understand them and if they listened
well to you.

The date for the second session is 2-4pm on Wednesday, May 25th, 2011.
There will be a day (or more) to work with me to learn your part
before May 25th. I will hire and pay each of the actors for their
time and help. If you think you would like to be an actor for this,
please email me (kamweber@iupui.edu) or call the Center for Youth and
Adults with Conditions of Childhood (CYACC) at Riley Hospital at
317-948-0060. Please also let me know if you have questions to help
you decide if you would like to be an actor.

Sincerely,

Katie Weber, MD

Associate Professor of Clinic Medicine and Clinical Pediatrics

Indiana University School of Medicine

Center for Youth and Adults with Conditions of Childhood (CYACC)

Thank you for your help in training the doctors of today and tomorrow,

Lisa Tokarz-Gutierrez, Executive Director

Good Food, Good Times, Good Employment Practices: O’Charley’s

2011-01-26T08:57:00.000-08:00

Meet Marty Mason, a Self Advocate that volunteers for Down Syndrome Indiana and is employed by O’Charley’s in Fishers, Indiana. I recently visited him and his manager to find out more about what Marty does there.

When I arrived at O’Charley’s, I found Marty working diligently at one of the booths in the restaurant. I asked him what he does and he explained that after he clocks in, he rolls the silverware, “1 knife, 2 forks” inside the napkins. He also polishes the silverware before he rolls it. He alternates between two stations doing both jobs on Monday and Friday mornings.
Next, I spoke with the General Manager of the restaurant, Jay Eicher. I asked him how he chose to hire Marty. He explained that originally he had worked with Noble to hire Marty. However, when Marty was no longer receiving support for employment services through Noble, O’Charley’s made the decision to retain Marty, where he has been employed for approximately two years. I then asked for some input on what it is like to work with Marty and the answers Jay gave are similar to what other employers say about working with individuals that have a disability. Jay said, “Marty has never missed a day of work unless there was a family function and it was pre-arranged”. He went on to say that Marty is very, “reliable”, “does a great job” and is, “a pleasure to have in the building”.

Jay expressed his gratitude for the, “huge effort put forth by the family” and their loyalty to O’Charley’s. They celebrate birthdays and special occasions there to show their support for including Marty in the O’Charley’s family.

Down Syndrome Indiana believes that individuals with Down syndrome are valuable employees who bring needed skills and talents to the workplace. Yet the unemployment rate for individuals with intellectual disabilities remains embarrassingly high. It is estimated that only 22% of individuals with developmental or intellectual disabilities are employed.
Please encourage local employers like Jay Eicher and O’Charley’s to employ individuals with Down syndrome. You can send a thank you letter to Jay at:

O’Charley’s
c/o Jay Eicher, General Manager
11655 Fishers Corner Blvd.
Fishers, IN 46038

Before leaving, I asked Marty, “Do you love your job? He said, “YES! And today is payday!”. It was my payday too so I completely understood the enthusiasm.

2011-01-14T11:14:00.000-08:00

An informational alert prepared by Fifth Freedom
Information courtesy of the Governor's Council for People with Disabilities

Help shape Indiana's Disability Policy by completing the 2011 Disability Poll
The following is a message from the Indiana Governor's Council for people with Disabilities:

-----

Help Shape Indiana's Disability Policy! Have you responded yet to this year's Disability Poll? If not, it's time to add your voice!

The Governor's Council for People with Disabilities, Indiana Protection & Advocacy Services, and the Indiana Institute on Disability & Community invite you to participate in the 2011 Disability Poll. This year, the focus is on what should be Indiana's policy priorities for people with disabilities.

To respond, simply go to this website: http://www.thepollingplace.org . If clicking the link does not work, copy and paste the link into your browser's address bar. If you answered the survey at the Governor's Disability Conference this past December, there's no need for you to do it again.

The survey is also available in alternative formats. Call: 812-855-6508, Toll-free: 800-825-4733, or TTY: 812-855-9630. You may also email cpps@indiana.edu to request an alternative format.

The Disability Poll is conducted annually by the Institute's Center on Planning and Policy Studies, under the direction of Dr. Vicki Pappas. This is a joint project of the DD Network in Indiana: the Institute, the Governor's Council for People with Disabilities, and Indiana Protection and Advocacy Services.

Christine Dahlberg, Deputy Director
Governors Council for People with Disabilities
402 W Washington St, Rm E-145
317-232-7774
cdahlberg@gpcpd.org

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CYACC Project

2011-01-08T10:29:00.000-08:00

Dear DSI Self-Advocate and Family:

I am writing this letter to ask you to help with a project I have started. The project is to teach doctors how to take better care of their patients with intellectual disabilities. I believe that self-advocates and their families are some of the best teachers. I would love to have the best help possible!

One of the ways I would like to teach the doctors is by having them practice in a classroom that looks like a doctor’s office. In this classroom, actors pretend to be patients so the doctors can practice their doctor skills. I am asking if you would like to be an actor in this classroom. It will mean coming to the classroom at least twice. The first time will be practice for you. You will see what the classroom is like. You will learn how to act like a patient in the classroom. We will practice the kinds of questions the doctors will ask and how you should answer them. We can have extra practice for you if we decide this is needed. The second time will be practice for the doctors. This time, you will spend 2 hours acting as a patient for 4 different groups of doctors. They will ask you questions and you will answer like we practiced. After each group of doctors, you will have the chance to tell them how they did. I would like you to tell the doctors if you could understand them and if they listened well to you.

The date for the second session is 2-4pm on Wednesday, May 25th, 2011. There will be a day (or more) to work with me to learn your part before May 25th. I will hire and pay each of the actors for their time and help. If you think you would like to be an actor for this, please email me (kamweber@iupui.edu) or call the Center for Youth and Adults with Conditions of Childhood (CYACC) at Riley Hospital at 317-948-0060. Please also let me know if you have questions to help you decide if you would like to be an actor.

Sincerely,

Katie Weber, MD
Associate Professor of Clinic Medicine and Clinical Pediatrics
Indiana University School of Medicine
Center for Youth and Adults with Conditions of Childhood (CYACC)

7 Reasons to Support DSI this season

2010-12-17T09:25:00.000-08:00

This is an exciting time for the Down syndrome community in Indiana, and we are inviting you to be a part of it! Listed below are some of our favorite reasons to support DSI. I hope you agree and choose your favorite to financially support this holiday season as well.

SEVEN Reasons to Support to DSI:

1. Individuals with Down syndrome get the chance to go to college. Just like you or I, individuals with Down syndrome desire to be included in their community and to attend college. Thanks to the hard work of the Indiana Postsecondary Education Coalition, this is now possible in Indiana! Down Syndrome Indiana will create a website specifically on postsecondary education in Indiana for individuals with an intellectual disability and host a conference to show Indiana colleges what a successful program looks like and how truly inspiring it is! Click here for more information on this topic.

2. People with Down syndrome are beautiful.Join Down Syndrome Indiana as we partner with Midwest Fashion Week for a week of fashion-related events from March 12th to March 19th to show the entire Midwest how beautiful it is to live in an inclusive community. During this week, rising stars will shine, fashion will have a purpose, and we are definitely going to show off our designer genes! Click here for more information.

3. Approximately 1 out of every 733 babies is born with Down syndrome, making it the most common genetic condition.These parents don’t need you to feel sorry for them! They need resources and support as they raise their beautiful child just as any new parent would! Down Syndrome Indiana provides New Parent Packets that contain indispensible local resources for families that love a child with Down syndrome. Click here for more information.

4. Students with Down syndrome get a better education thanks to advocacy.Down syndrome Indiana provides Educator Toolkits free of charge! This is a rich resource full of books that encourage classroom inclusion and the better education of students with Down syndrome. Click here for more information.

5. The attitude of the father becomes the attitude of the family.Dads Appreciating Down Syndrome (D.A.D.S.) exists to assist and support, through fellowship and action, the fathers and families of individuals with Down syndrome. Fathers are challenged to be a better and more involved father and husband, as well as a stronger advocate for his child with Down syndrome. Click here for more information.

6. Down Syndrome Indiana walks the talk.The Buddy Walk® was developed by the National Down Syndrome Society in 1995 to bring together a wide range of concerned individuals to reach out to friends, family, and co-workers to promote awareness and inclusion for people with Down syndrome and to raise funds for education, research, and advocacy programs. The 2011 walk will be held on Saturday, October 8, 2011 at Celebration Plaza in White River State Park, and we want 5,000 participants! Click here for more details.

7. The entire family benefits when parents are involved in programs of support and resource enrichment.Down syndrome Indiana offers a variety of parent support groups across Central Indiana whose purpose is to help strengthen families that love a child with Down syndrome! Click here for more information.

Thank you for taking the time to read this letter and to dream of a better life for individuals with Down syndrome. Please click here to support Down Syndrome Indiana’s mission.
Dedicated to enhancing the lives of individuals with Down syndrome

Dr. Schreiner, 2011 Board Chair Lisa Tokarz-Gutierrez, Executive Director

P.S. The above seven options are just a sample of the many valuable programs available through Down syndrome Indiana that support and enhance the lives of individuals with Down syndrome. For more information on these or any of our programs, please visit www.dsindiana.org. Also, please do not hesitate to contact Lisa at lisa@dsindiana.org or call the office at (317) 925-7617.

Child Care Answers

2010-12-17T05:21:00.000-08:00

Down Syndrome Indiana often gets questions about finding quality childcare for your child with Down syndrome and their siblings. I would like to introduce you to a resource that you may use to assist your search for quality childcare. It is called, Child Care Answers. Child Care Answers provides:

· Individualized referrals to family child care homes, centers, ministries, pre-schools,
before/after school and summer programs.
· Enhanced services for families with children who have special needs, including the
availability of an inclusion specialist on staff.
· Information on Indiana laws and regulations relating to child care.
· Education on how to choose a quality child care and early education program.
· A quality rating system called Paths to Quality to help you find the best fit.
· Bi-lingual staff.

Child Care Answers serves the following counties:
Hamilton
Hendricks
Johnson
Marion

Information and applications for financial assistance with child care are available but I was advised that there is about a 9 month waiting list.

For more information, you can contact Child Care Answers at 317-631-4643 or you can visit their website at www.childcareanswers.com

Down Syndrome Indiana Stars

2010-12-11T06:22:00.000-08:00

On December 5th, Down Syndrome Indiana hosted its annual Holiday Party and Star Awards. I would like to introduce you to our winners:

Meet Ann Gibson:

Ann has been a wonderful board member and officer of DSI for many years. Early in Ann's service on the board the Buddy Walk(R) was without a leader and Ann stepped up and took charge, resulting in a very well organized and successful Buddy Walk(R). At a board meeting after that walk, Ann said that chairing the Buddy Walk(R) committee was one of the most rewarding things she had done. And, Ann has done all this service for children with Down syndrome and their families even though she does not have a family member with Down syndrome. When she agreed to serve on the board, she said that she wanted to do something to help others and she saw Down Syndrome Indiana as an organization in which she could fulfill that need. People with Down syndrome, their families and our community have benefited so much from Ann's commitment. Thank you Ann!

Meet Katie Shaw:

Katie is a remarkable individual with a drive for excellence! For Katie, no job is left undone. Whether it is filing paperwork, lifting heavy boxes, visiting donors, assisting staff, etc. Katie is one of the most dependable and reliable volunteers that we have here at DSI. She is an inspiration to all of us! Thank goodness for volunteers like Katie!

Meet Kate von Eiff:

Brian von Eiff, Kate's son, dreamed of going to college like his Best Buddy, Brad, but there were no programs in Indiana for Brian to attend. Brian's mom, Kate, didn't think that was acceptable and began conversation with local universities about allowing Brian to take courses there. Years later, there is a workgroup called the Indiana Postsecondary Education Coalition whose mission is built around a world in which young adults with developmental and intellectual disabilities can choose to take college courses if they want to because it will help them to have a better career and to be more independent. Thank you Kate for helping Down Syndrome Indiana dream bigger for all of our families!

Why a Star?

Focus: Parents, siblings, educators, and other friends and family often describe individuals with Down syndrome as "stars" or the center of attention. The star logo 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.

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

Inspiration: As a group of people familiar with the history of Down syndrome and it's treatments, 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.

International Day of Persons with Disabilities

2010-12-03T09:36:00.000-08:00

Did you know that today is the International Day of Persons with Disabilities Day? The observance of this day on December 3rd of each year was established to promote a better understanding of disability rights issues for persons with disabilities. It is also about celebrating the positive impact of inclusion of individuals with disabilities in every aspect of their political, social, economic and cultural life and was adopted by the United Nations General Assembly in 1982.

Expect a Proclamation to be issued by President Obama later today regarding international rights for people with disabilities.

Starting this month, the White House Disability Group began hosting monthly conference calls to update you on disability-related issues, and to introduce you to the folks in the federal government who work on disability issues. The first call was held today, December 3, at 11:00 am ET.

If you would like to be added to the distribution list to find out when the White House calls will be held, please send an e-mail to: sfeuerstein@who.eop.gov. Please include the following information:

Name and Title
Organization
E-mail address
Phone number

You can also follow issues on Facebook as well at: www.facebook.com/saheumann.

The next call is expected to be in January 2011. You will be notified if you join the distribution list.

November 29th marked the 35th Anniversary of the Individuals with Disabilities Education Act (IDEA). This landmark piece of legislation supports, “ states and localities in protecting the rights of, meeting the needs of and improving results for children with disabilities and their families”. You can visit the website that was created by the Department of Education's Office of Special Education & Rehabilitative Services (OSERS) around IDEA by clicking on this link:

http://www2.ed.gov/about/offices/list/osers/idea35/index.html

SEVEN Reasons to Support DSI

2010-10-29T11:07:00.000-07:00

I Support Down Syndrome Indiana because:

1. Individuals with Down syndrome get the chance to go to college… Just like you or I, individuals with Down syndrome desire to be included in their community and attend college. Thanks to the hard work of the Indiana Postsecondary Education Coalition, this is now possible in Indiana! Down Syndrome Indiana will create a website specifically on postsecondary education in Indiana for individuals with an intellectual disability and host a conference to show Indiana colleges what a successful program looks like and how truly inspiring it is!

2. People with Down syndrome are beautiful… Join Down Syndrome Indiana as we partner with Midwest Fashion Week for a week of fashion related events from March 12th to March 19th to show the entire Midwest how beautiful it is to live in an inclusive community. During this week, rising stars will shine, fashion will have a purpose and we are definitely going to show off our designer genes!!!!

3. Approximately 1 out of every 733 babies is born with Down syndrome making it the most common genetic condition…..These parents don’t need you to feel sorry for them! They need resources and support as they raise their beautiful child just as any new parent would! Down Syndrome Indiana provides New Parent Packets that contain indispensible local resources for families that love a child with Down syndrome.

4. Students with Down syndrome get a better education thanks to advocacy…Down syndrome Indiana provides Toolkits to Educators free of charge! This is a rich resource full of books that encourage classroom inclusion and the better education of students with Down syndrome.

5. The attitude of the father becomes the attitude of the family… Dads Appreciating Down Syndrome (D.A.D.S.) exists to assist and support through fellowship and action, the fathers and families of individuals with Down syndrome. Fathers are challenged to be a better and more involved father and husband, as well as a stronger advocate for his child with Down syndrome.

6. Down Syndrome Indiana walks the talk…. The Buddy Walk® was developed by the National Down syndrome Society in 1995 to bring together a wide range of concerned individuals to reach out to friends, family and co-workers to promote awareness and inclusion for people with Down syndrome and to raise funds for education, research and advocacy programs. The 2011 walk will be held on Saturday, October 8, 2011 at Celebration Plaza in White River State Park and we want 5,000 participants!

7. The entire family benefits when parents are involved in programs of support and resource enrichment… Down syndrome Indiana offers 10 different parent support groups across Central Indiana whose purpose is to help strengthen families that love a child with Down syndrome!

The "R" Word is officially politically incorrect!

2010-10-06T07:16:00.000-07:00

Happy Down syndrome Awareness month! How are you celebrating? Well, the US Congress and President Barack Obama have given us a very special gift to help us celebrate! The President signed Rosa’s Law! This law will remove the terms, “mentally retarded” and “mental retardation” from federal education, health and labor laws and replace it with the term, “intellectual disability”.

Who is Rosa?

Did you know that this happened because of Rosa Marcellino, a nine year old girl with Down syndrome who lives in Maryland? Inspired by Rosa, Senator Mikulski promised that if the State of Maryland passed this law she would take it to the floor of the US Senate; and she did!

What about Indiana?

Thanks to the leadership and foresight of the Arc of Indiana and Self Advocates of Indiana when they were asked this same question, Kim Dodson, Associate Executive Director of the Arc of Indiana said this, “ A few years ago, we did do a … clean up that removed “mr” in as many places as we could and shifted things to person first language."

Down syndrome Indiana is dedicated to enhancing the lives of individuals with Down syndrome and we are ever so grateful to everyone else that is dedicated to this mission as well!

Happy Down syndrome Awareness month!

With great freedom comes great responsibility...

2010-08-27T11:53:00.000-07:00

Down Syndrome Indiana would like to sincerely thank John Shaffner, Chairman and CEO of the Academy of Television Arts and Sciences for not airing the song, “Down Syndrome Girl” from the TV series, “FAMILY GUY” during the Creative Arts Awards on August 21st or during the Emmy Awards on August 29th.

While the withdrawal of the song is in itself is certainly a victory, whenever an issue such as this or Jennifer Anniston’s use of the R –word on Regis and Kelly arises it brings up a much larger issue and that is the issue of our freedom of speech. A common question I am going to hear and have heard many times in response to this issue is “If we as Americans have the right to free speech than don’t we have the right to make and air songs such as this?” Absolutely, the right to free speech gives individuals the right to make and air songs such as this but the answer is that the right to free speech also gives advocates the right to call out lewd or offensive speech and let others know that it portrays a class of people (in this case the largest minority in the country-those with a disability) in a negative and unfair light. To quote Sarah Schleider, Vice President of Marketing and Communications for the National Down Syndrome Society, “When people with Down syndrome are inappropriately referenced, it sustains and perpetuates these low expectations and negative stereotypes, and further impedes the acceptance of people with disabilities in schools, the workplace, and the community. Negative and inaccurate public perceptions are the greatest barriers”, to achieving the inclusion and acceptance of individuals with Down syndrome that we as advocates are striving to reach.

I believe deeply in individual freedoms but to quote a character in the movie Spiderman, “With great freedom comes great responsibility”. Again, thank you to the Academy of Television Arts and Sciences for having the good sense and responsibility not to air the song.

The Sky's the Limit when it comes to Down syndrome!

2010-08-17T08:39:00.000-07:00

INDIANAPOLIS – During halftime of their first pre-season game on Sunday, August 15, the
Indianapolis Colts recognized twenty-four outstanding volunteers and philanthropists by having Colts owner Jim Irsay present them with a Golden Horseshoe Award! This is the first year for the Golden Horseshoe Award, which was created by the Colts to raise awareness for local charities and their volunteers and philanthropists who are making a significant impact in our local communities.

Down Syndrome Indiana is proud to be one of the twelve charitable organization’s honored at Sunday’s game. Meet our top volunteer and top philanthropist below:

Angie Cain is a 26 year old with Down syndrome and has volunteered more than 400 hours with Down Syndrome Indiana! Angie participated in the “Our Voice…Our Vision…Our Future” conference that was put on by the Arc of Indiana and the Indiana Governor’s Council for People with Disabilities. While there she shared her voice and opinion on critical issues impacting people with developmental disabilities and their families. In addition, she has represented Down Syndrome Indiana on television encouraging others to attend and support the local Buddy Walk ®.

The dedicated owners and staff of Montgomery Aviation take pride in fund raising for Down Syndrome Indiana each year. For the past three years, Montgomery Aviation has hosted a Fly-in and Fundraiser that have generated more than $36,000 to support the mission of Down Syndrome Indiana making it the largest single donor to the organization.

In celebration, please join us at the Fly-in and Open House on Saturday, August 21st from 10am to 2pm at the Indianapolis Executive Airport where the sky is truly the limit for individuals with Down syndrome! The airport is located at 11329 East S.R. 32, Zionsville, IN 46077. This event is open to the entire community and admission is free! Join us for aircraft displays, children’s activities, military aircraft, live music and food!

Together Down Syndrome Indiana and Montgomery Aviation celebrate an event where the sky is truly the limit!

For more information call 317-925-7617 or visit www.dsindiana.org.

DSI Volunteers to receive award from Indy Colts!

2010-08-12T11:32:00.000-07:00

During halftime of their first pre-season game on Sunday, August 15, the
Indianapolis Colts will recognize twenty-four outstanding volunteers and philanthropists by
presenting them with the Golden Horseshoe Award. These individuals represent twelve charitable organizations in the Central Indiana community who are working to make a difference in the lives of Hoosiers.

Down Syndrome Indiana is proud to be one of the twelve charitable organization’s honored at this Sunday’s game. Down Syndrome Indiana chose to recognize the following volunteer and philanthropist for the award:

Angie Cain is a 26 year old with Down syndrome and has volunteered more than 400 hours with Down Syndrome Indiana. Angie participated in the “Our Voice…Our Vision…Our Future” conference that was put on by the Arc of Indiana and the Indiana Governor’s Council for People with Disabilities. While there she shared her voice and opinion on critical issues impacting people with developmental disabilities and their families. In addition, she has represented Down Syndrome Indiana on television encouraging others to attend and support the local Buddy Walk ®.

The dedicated owners and staff of Montgomery Aviation take pride in fund raising for Down Syndrome Indiana each year. For the past three years, Montgomery Aviation has hosted a Fly-in and Fundraiser that have generated more than $36,000 to support the mission of Down Syndrome Indiana making it the largest single donor to the organization.

This is the first year for the Golden Horseshoe Award, which was created by the Colts to raise awareness for local charities and their volunteers and philanthropists who are making a significant impact in our community. Down Syndrome Indiana is honored to be among the first organizations to receive this award..... GO COLTS!!!!!!!

Down Syndrome Indiana and Ball State Athletics partner for a winning season!

2010-08-05T08:22:00.000-07:00

Down Syndrome Indiana and Ball State Athletics partner for a winning season by joining forces to support local athletics. During the 2010 football season, Down Syndrome Indiana will receive a portion of the proceeds of ticket sales sold through the Down syndrome Indiana office. “ We are very pleased to be working with Down Syndrome Indiana in their efforts to serve individuals with Down syndrome and their families. Their programs and services touch many lives in the local area and Ball State Athletics is proud to be associated with organizations centered on community outreach. Strategic partnerships like this one are an absolute necessity to achieving mutual success. We look forward to a fruitful relationship with DSI.” Says Matt Wolfert, Associate Athletic Director of External Affairs at Ball State University. In addition, Lisa Tokarz-Gutierrez, Executive Director of Down Syndrome Indiana had this to say, “ Down Syndrome Indiana is excited to be partnering with Ball State Athletics. This is not only a great fundraising opportunity for DSI but it is a great opportunity to get our families, our stories and our mission front and center with a new audience!” If you are interested in purchasing tickets for the 2010 Ball State football season, please contact Down syndrome Indiana at 317-925-7617 or email: register@dsindiana.org.

Please complete survey by July 23rd!

2010-07-21T12:25:00.000-07:00

Dear Friend:

Last spring, The Arc of Indiana’s Education and Governmental Affairs Committees came together after a conversation with Superintendent of Public Instruction, Dr. Tony Bennett, to brainstorm on issues facing special education.

Now that they have identified key issues, they would like a broader discussion on prioritizing these issues. We are requesting your help!

The Arc of Indiana has put these issues on-line and would like you to send this information out to everyone you think may be interested in education issues. The more input the better.

Dr. Bennett is very interested in hearing what the primary issues are facing special education from a family and advocate perspective.

The deadline for people to get on-line is Friday, July 23. After that the Arc will be putting together a report for Dr. Bennett and the education team. The report will also be on The Arc of Indiana’s website.

Thank you in advance for helping us with this endeavor. We feel it is very important to get as much input as possible and appreciate your time in making this happen.

Here are the directions for participation:

Browse to http://cwlab.groupsystems.com/ (no www.) and log in with the following information:

Meeting ID: 14669
Passkey: bennett
E-mail: Your e-mail
Username: Your name

To get started: Double-click “Dr. Bennett Session” in the menu on the left hand side, then you will enter the voting area.

Read through the ballot items on the right. You can slide the vertical red line (left of the Priority tab) left or right to adjust the viewing window to expand the pane and show more or less text. You may also double click the item to see it in full.

To vote: Under priority, click and drag the slider bar from 1 to 5, 5 being the highest priority.

Once you have finished, click Vote on the silver bar at the top, then Cast Vote and your vote will be entered. If you have not voted 1-5 on all of the ballot items, you will be prompted to do so when attempting to cast your vote.

For technical support please feel free to e-mail us at help@arcind.org

This request has been sent to several groups. If for some reason you are unable to logon to the sight, it may be because it is full. Please be patient and try again at a later time. Please keep in mind that the deadline to participate is Friday, July 23.

We look forward to everyone’s feedback!

Sincerely,

Kim Dodson
Associate Executive Director

Jeff Huffman
Education Committee Chairman

A Letter of Gratitude

2010-07-17T08:18:00.000-07:00

It is a pleasure and an honor to pay tribute to an amazing family that has truly made a positive impact on the lives of individuals with Down syndrome in their local community, their state and the entire nation!

I proudly serve as the Executive Director of Down Syndrome Indiana and can easily tell you that neither myself nor the organization could be what it is today without the effective leadership and guidance of Joe Bockerstette! In 2007, Joe began leading the Indiana Down Syndrome Foundation through a strategic planning process that lasted approximately nine months. During those nine months an amazing team of individuals under the direction of Joe met during countless evenings and Saturday mornings where Joe graciously drove down from Fort Wayne to assist and facilitate a plan that gave birth to a much improved organization. Even after the plan was adopted by the Board of Directors and the organization given the new name, Down Syndrome Indiana, Joe continued to nurture the bonds by coming down to Indy annually to review, check progress, offer suggestions and keep us on track!

One of my favorite children’s movies is an animated film called, Robots. In the movie, the main character, Rodney, says over and over, “see a need, fill a need”. I love the concept of being successful because you find a gap that needs to be filled and you take leadership, step up and just fill it. This is exactly what Joe has done with our organization. He could tell that the then Indiana Down Syndrome Foundation was in need of guidance and he stepped up and voluntarily led us through nine months of strategic planning to the rebirth of the organization now known as Down Syndrome Indiana.

Joe, you have done so much for an organization that is near and dear to my heart that I have no idea how to ever repay your kindness. So, Down Syndrome Indiana would like to make a donation in the name of Amy Bockerstette to the Joshua O’Neill and Zeshan Tabani Enrichment Fund. In addition, we promise to stay true to the mission of enhancing the lives of individuals with Down syndrome that you helped us to develop. Our mission is to serve as a conduit of information, support and advocacy for individuals with Down syndrome and their families, which promotes growth and inclusion in the community. Joe, we have always been proud to say that you were a fellow Hoosier and we will miss you dearly when you move to another state but, your move is just another testament to your dedication as it helps you grow the Ds community a little more!

Pass the Able Act!

2010-07-10T08:41:00.000-07:00

I would like to ask each of you to consider contacting your member in the US House of Representatives and ask him to help pass the Achieving a Better Life Experience (ABLE) Act. The ABLE Act will allow individuals with disabilities to create a disability savings account or 'ABLE Accounts' that would accrue interest tax-free. The account could fund a variety of essential expenses for the individual, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. See the additional details below from the National Down Syndrome Society.

Congressman Ander Crenshaw sponsored this very important legislation. I could try and tell you all about it, but Congressman Crenshaw’s recent Op Ed piece in the Washington Times says it more eloquently than I could ever hope to. Please read about it here:

http://www.washingtontimes.com/news/2010/jun/25/able-act-is-a-step-worth-taking/

It is important to take action now! The ABLE Act enjoys strong bi-partisan support in the US House of Representative with 184 representative that have signed on as co-sponsors of this important legislation. As many of you know, the 111th Congress is quickly drawing to a close. If we do not pass this now, we will be starting all over again in the 112th Congress. Many disability advocacy groups have put in countless long hours walking the halls of congress to educate our representatives on the importance of the ABLE Act and the positive impacts it will have on families and individuals with disabilities. Let’s not lose the momentum.

Please call your congressman!. The good news is that most of our representatives in Indiana are already co-sponsors (Steve Buyer and Baron Hill are the only exceptions), so you will be asking them to help move this important legislation out of committee and to the floor of the house for a full vote. And to make it easy, the National Down Syndrome Society has provided a script that you can use when you call. To find your US House Member and the script click on the Take Action link below:
Take Action!

Thank you,
Tom Milvert
Down Syndrome Indiana
Governmental Affairs Committee Chair

-----------------------------------------------------------------

HELP US PASS THE ABLE ACT IN THIS CONGRESS!
Contact Your Representatives to Convene a Hearing and Vote on the ABLE Act Today

As you know, the National Down Syndrome Society endorsed the Achieving a Better Life Experience Act (ABLE) of 2009 (S. 493/H.R. 1205). 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. The ABLE Act will allow individuals with disabilities to create a disability savings accounts or 'ABLE Accounts' that would accrue interest tax-free. The account could fund a variety of essential expenses for the individual, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation.

The legislation continues to have widespread, bipartisan support. Currently, H.R. 1205 has 184 cosponsors, including 19 members of the House Ways & Means Committee.

The time to pass this bill is now- Please contact your Representatives to encourage them to convene a hearing and vote on the ABLE Act today!

National Alliance for Full Participation

2010-06-11T05:12:00.000-07:00

The National Alliance for Full Participation (AFP) is interested in how Indiana is doing on the path to the ambitious goal of 50% employment of people with intellectual and developmental disabilities in five years. They have created a “scorecard” of possible benchmarks for state Alliances. This scorecard was created to help Indiana review the state policies, practices, and strategies that impact on opportunities for integrated employment. The answers on this scorecard will help Indiana identify priorities and set goals for employment initiatives and outline a strategy for doubling our state’s rate of integrated employment by the year 2015.

Please take a moment to complete this survey by visiting http://surveys.cwlab.org/s-a2r0d-265617.

For more information on the National Alliance for Full Participation http://www.allianceforfullparticipation.org/. For information on the work of the Indiana Alliance, visit their webpage at http://www.iidc.indiana.edu/?pageId=7&newsId=218&newsType=0. To access the Indiana Alliance Facebook page visit http://www.facebook.com/pages/Indiana-Alliance-for-Full-Participation-State-Team/168304808253

DSI a Big Winner in Indy 500

2010-06-03T08:18:00.000-07:00

Indianapolis not-for-profit a big winner in Graham Rahal's 12th place 500 finish!

Graham Rahal's 12th place finish in this year's Indy 500 gives a big boost to Down Syndrome Indiana! Graham, who likes to help organizations through his professional racing, chose Down Syndrome Indiana as his charitable organization of choice for this year's Indy 500 race. Not only did Down Syndrome Indiana benefit from the publicity it garnered by having their logo plastered on the front of Graham's #30 Quick Trim Special, which started on the inside of Row 3, but the Bobby Rahal Foundation (a charitable foundation started by Graham's father and 1986 500 champion, Bobby Rahal) also made a $2,500 contribution to DSI. In addition, Graham Rahal personally matched the contribution for a total of $5,000 given to enhance the lives of individuals with Down syndrome by the Rahal Letterman Racing Team.

"We couldn't be more pleased with the partnership!" said DSI Executive Director Lisa Tokarz-Gutierrez. "One of the great things about being in my position as a professional race car driver is that I can use my position to help organizations like Down Syndrome Indiana" said Graham Rahal. "We are genuinely pleased that we could help DSI …" Said Johanna Maher, Senior Vice President of Sales and Marketing with Rahal Letterman Racing.Graham's decision to support DSI was clinched when he met 11 month old Catalina Joyce as she and her father, Jeff Joyce, visited Netheads. "He was such a nice, down-to-earth guy", said Jeff, "And he was genuinely interested in helping our organization to create awareness about acceptance and inclusion of individuals with Down syndrome.

In the words of Jeff Joyce, father of Catalina Joyce with Down syndrome, “This goes to show what a stand-up guy Graham is for following up on this for us. You can’t imagine how much this can help our organization, Down Syndrome Indiana, and my Daughter Catalina. ….Graham Rahal and Rahal Letterman Racing are first class operations.”

About Down syndrome
Down syndrome occurs in approximately one out of every 733 live births and there are approximately 350,000 individuals with Down syndrome living within the United States. Down syndrome is the most common chromosomal abnormality and is caused by a triplication of the 21st chromosome. It is indiscriminate of race, religion or economic status. Therefore Down syndrome affects all walks of life. People with Down syndrome possess a wide degree of abilities and are active participants in civic, educational, occupational, social and recreational activities in the community.

About Down Syndrome Indiana
Down Syndrome Indiana is dedicated to enhancing the lives of individuals with Down syndrome. Our mission is to serve as a conduit of information, support and advocacy for individuals with Down syndrome and their families, which promotes growth and inclusion in the community.

For more information about Down Syndrome Indiana, or this particular story, please contact Lisa Tokarz-Gutierrez at lisa@dsindiana.org or by calling 317-925-7617.

DSI Gets Marketing Opportunity of a Lifetime

2010-05-29T06:36:00.000-07:00

[Indianapolis, Indiana] Local nonprofit organization, Down Syndrome Indiana gets the marketing opportunity of a lifetime when Graham Rahal of Rahal Letterman Racing agreed to place its logo on his car during the Indianapolis 500 this Sunday!

Inspired by Catalina Joyce, a child with Down syndrome and the Joyce Family of Indianapolis, when Graham Rahal was asked to place the logo on his car, he agreed and according to Johanna Maher, Senior Vice President of Sales and Marketing with Rahal Letterman Racing, “ Graham Rahal likes to have an organization to stand behind and hadn’t found one yet, so when Jeff Joyce asked, we agreed”

Not only did Rahal Letterman agree to put the logo on the car, the Bobby Rahal Foundation agreed to make a donation to the organization for every lap completed by Graham and to double the donation if he finishes in the top three! In addition, Graham Rahal agreed to make a personal donation as well.

In the words of Jeff Joyce, father of Catalina Joyce with Down syndrome, “This goes to show what a stand-up guy Graham is for following up on this for us. You can’t imagine how much this can help our organization, Down Syndrome Indiana, and my Daughter Catalina. ….Graham Rahal and Rahal Letterman Racing are first class operations.”

Down Syndrome Indiana Executive Director, Lisa Tokarz-Gutierrez had this to say, “ Down Syndrome Indiana is thrilled to partner with Graham Rahal and the Rahal Letterman Racing Team to promote awareness and acceptance of individuals with Down syndrome at this year’s Indy 500! We wish Graham the best of luck. It is a huge victory for individuals with Down syndrome to have our logo displayed on Graham’s car. It will go unbelievably far in enhancing the lives of individuals with Down syndrome, not only in Indiana but across the United States as well. This is truly a dream come true for our families to have their children embraced by the racing community. We are incredibly fortunate for this amazing opportunity and completely impressed over and over with the generosity of Graham Rahal. “

About Down syndrome
Down syndrome occurs in approximately one out of every 733 live births and there are approximately 350,000 individuals with Down syndrome living within the United States. Down syndrome is the most common chromosomal abnormality and is caused by a triplication of the 21st chromosome. It is indiscriminate of race, religion or economic status. Therefore Down syndrome affects all walks of life. People with Down syndrome possess a wide degree of abilities and are active participants in civic, educational, occupational, social and recreational activities in the community.

About Down Syndrome Indiana
Down Syndrome Indiana is dedicated to enhancing the lives of individuals with Down syndrome. Our mission is to serve as a conduit of information, support and advocacy for individuals with Down syndrome and their families, which promotes growth and inclusion in the community.
For more information about Down Syndrome Indiana, or this particular story, please contact Lisa Tokarz-Gutierrez at lisa@dsindiana.org or by calling 317-925-7617.
###

Self Advocates and College

2010-05-28T12:39:00.001-07:00

Do you dream about your son or daughter going to college when they graduate high school? You should! And DSI is here to introduce you to a few DSI Self Advocates who have attended college and want to tell you about their experiences.

Join the Down Syndrome Indiana Self Advocates as they discuss their college experiences on June 1st 2010 from 6pm to 8pm in the Marott Community Room at 2625 North Meridian Street, Indianapolis, IN 46208. Come hear about the programs they have attended, how they feel it has helped them in life and learn a little bit about the Indiana Postsecondary Education Coalition and what you can expect from the group in the future. Featured panelists currently include: Jessica Green, Joel Persinger, Kelley Schreiner, and Sarah Strouse with group moderation by Cindy Cobb.

No matter what age your child is now, this is a great meeting to attend so you can start setting your expectations high!

Please RSVP to register@dsindiana.org or call 925-7617 so we can order the right amount of food!

Please pass this info on….. If you know any Self Advocates who have attended a college program but that are not currently on the panel and would like to participate, please contact Lisa Tokarz-Gutierrez, Executive Director at lisa@dsindiana.org or call 317-925-7617 for more info.

Speak your mind

2010-05-20T07:14:00.000-07:00

SPEAK YOUR MIND!
Rate your community’s implementation of the Americans with Disabilities Act!

People with disabilities, their family members, and their advocates are invited to complete the 2010 ADA POLL, a survey about how Indiana communities are doing with implementation of the ADA. It’s important that your voices are heard when accessibility and discrimination issues are being addressed in your community! So don’t delay – let us know what you have to say!

The 2010 ADA POLL is available online at: www.ThePollingPlace.org
It is also available in alternative formats – see below

The ADA has been in effect since 1990 - nearly 20 years have passed for communities to remove physical, programmatic, and attitudinal barriers that prevent people with disabilities from becoming active participating citizens. Progress has been made, but there is still need for further compliance. The 2010 ADA POLL asks Indiana citizens to identify how they view current implementation of the ADA in their own communities. Here is your opportunity to provide opinions and ideas about where to improve accessibility!

The results of the 2010 ADA POLL will be used to "grade" your community +on its response to the ADA and will become a tool to educate policy makers, administrators, and the general public about the ADA. We hope that you will join us in this effort to learn more about community responses to the ADA.

To request the survey form in an alternative format, or for additional information, contact Dr. Vicki Pappas by phone: 1-800-825-4733 or e-mail: beheard@indiana.edu.

The 2010 ADA POLL is being conducted by the Indiana Institute on Disability and Community, in conjunction with the Governor’s Council for People with Disabilities, Indiana Protection and Advocacy Services, and the Great Lakes ADA Center.

Lending Library at IU is great resource

2010-04-30T09:17:00.000-07:00

Here in the office at Down Syndrome Indiana, the staff are always trying to learn about new resources and organizations that we can then share with you.

This week we spent some time with our friends at the Indiana Institute on Disability and Community (IIDC) at IU. While we learned about a ton of resources, there is one in particular that I would like to share with all of you; and that is their lending library!

In the IIDC lending library, over 8,500 books, videos, and kits are available that may be borrowed by anyone in Indiana for free. We were told shipping is free as well. The materials cover disabilities (including Down syndrome, of course) across the life span, life areas (such as education, employment, and recreation), and disciplines. To access the lending library, please go to this link: http://www.iidc.indiana.edu/CEDIR/ and click on “Search our collection”. You may also go straight to this link: http://www.iucat.iu.edu/uhtbin/cgisirsi/j6DfH0H0J0/B-CEDIR/270381193/60/1185/X

For more information or questions about the lending library, you can call 1-800-437-7924 or 812-855-9396.

Also, don’t forget that DSI has a lending library as well (but we don’t have 8,000 books)!

It is my pleasure to serve you!

Lisa Tokarz-Gutierrez
Executive Director

A Family Mission

2010-03-31T07:48:00.000-07:00

What does your family stand for? Have you tried to figure that out together? If not, I would highly encourage you to do so by creating a family mission statement together. It has had an amazingly positive impact on my family and I believe it can have one on yours too! According to Stephen Covey, one of my most favorite authors, in his book, The Seven Habits of Highly Effective Families, “A family mission statement is a combined, unified expression from all family members of what your family is all about and the principles you choose to govern your family life.”

I have to admit, it took my family a loooonnnnggg time to create our statement but I am so glad we did. It gives us something tangible to look at and say, “you know treating another family member like that isn’t part of what we stand for” or “yes, we will take that volunteer project on” together because it is what we as a family stand for. The process of putting the statement together was just endearing! Over the course of time, I would ask my children what was important to our family, what our family stood for etc. and file their responses away. I will never forget asking my three year old what he thought was important in our family and he said, “We’re best friends!”. Of course after posting the statement on the chalkboard, my oldest then wrote something to the effect of, “this sucks” all over it but deep down inside I know it brings him a sense of pride, LOL! After all as country singer Aaron Tippen says in his song, “You’ve got to stand for something or you’ll fall for anything.”

Here is a link to help you get started on your mission statement: http://www.franklincovey.com/msb/

It may just change your life…

Lisa Tokarz-Gutierrez, Executive Director

Down Syndrome Indiana Governmental Affairs Committee Receives Award!

2010-02-25T11:47:00.001-08:00

Down Syndrome Indiana Governmental Affairs Committee Receives Award!

On February 24, 2010, the Down Syndrome Indiana Governmental Affairs Committee (GAC) chaired by Tom Milvert of Columbus, IN received an award from the National Down Syndrome Society (NDSS) for their work in the area of public policy and in successfully addressing policy issues that affect individuals with Down syndrome and their families across Indiana. “The Down Syndrome Indiana GAC has demonstrated exemplary commitment, organization and creativity in implementing strategies to raise awareness of public policy issues among the members of the Down syndrome community in Indiana.” stated Madeleine Will, Vice President of Public Policy for the National Down Syndrome Society.

The award was received by Tom Milvert (GAC Chair) and Jeff Huffman (DSI Board President), representatives of Down Syndrome Indiana that traveled to Washington D.C. on February 24-25, 2010 to participate in the Buddy Walk on Washington ® to meet with members of the Indiana Congressional delegation to educate them about the strengths and needs of their constituents with Down syndrome. Down Syndrome Indiana is a nonprofit organization representing individuals with Down syndrome in Central Indiana. Down Syndrome Indiana is dedicated to enhancing the lives of individuals with Down syndrome. Our mission is to serve as a conduit of information, support and advocacy for individuals with Down syndrome and their families, which promotes growth and inclusion in the community.

The Buddy Walk on Washington® is a program of the National Down Syndrome Society (NDSS). The program brings together organizations and advocates from across the country to meet policy makers and raise issues of importance to people with Down syndrome and their families such as improving outcomes in education, opportunities for employment, asset development and independent living and increased resources for Down syndrome research and community services and supports.

There are more than 400,000 Americans living with Down syndrome. It is the most commonly occurring chromosomal condition. One in every 733 babies is born with Down syndrome. It is estimated that about 8,000 individuals with Down syndrome are currently living in Indiana. The life expectancy has increased dramatically in recent decades - from 25 in 1983 to 60 today. People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many ways.

While your stuck inside, tune in!

2010-02-05T09:59:00.000-08:00

Good afternoon DSI Families!

I just wanted to remind you that DSI will be featured on, “Now Hear This” on the following Indy radio stations at the following times this weekend:

WNDE AM 1260 at 7am on Saturday

Q95 at 7am on Sunday

X103 at 9am on Sunday

So, while you are stuck inside this weekend because of the snow, tune in!

Thanks so much to the above stations for hosting DSI, we can’t wait to come back and tell you more about our wonderful families!

It is my pleasure to serve you!

Lisa Tokarz-Gutierrez

New DSI Merchandise!

2010-01-16T12:49:00.000-08:00

Check out Down Syndrome Indiana's latest offering!

Official logo and apparel items are available at
www.companycasuals.com/dsindiana

Please join us in proudly wearing the new Down Syndrome Indiana apparel.

20 Volunteers with the most hours logged at DSI...

2009-12-17T06:35:00.000-08:00

I just wanted to take a moment to say thank you to the many volunteers who work so hard to make Down Syndrome Indiana such a wonderful organization! I would like to offer a special thank you to those of you that submit your hours to the office for tracking. Based on those hours, the following 20 volunteers have logged the most hours volunteering with Down Syndrome Indiana! Please pay special attention to those volunteers with a * after their name. These volunteers are self advocates and I think it is important to recognize the many contributions that individuals with Down syndrome make to Down Syndrome Indiana and their communities as a whole.....

Angie Cain*
Jessica Green*
Dee Sheda
Ellen Kempski*
Joel Persinger*
Joe Meares
Dominique Lewis*
Patricia Finkley
Jan Huffman
Vickie Hartman
Dr. Schreiner
Katie Shaw*
Marty Mason*
David Wood
Angie Everton
Rob Morgan
Libby Sheda
Morgan Sheda
Drew Marsh
Timothy McGinnis

Thank you again to all the Down Syndrome Indiana volunteers!

Happy Holidays,

Lisa Tokarz-Gutierrez, Executive Director

On Servant Leadership....

2009-12-10T06:53:00.000-08:00

A servant leader can be defined as someone that:

… believes their primary mission is to serve the needs of their constituents;

…measures their effectiveness in terms of their ability to help others and not just a bottom line;

…sees themselves as working for the group as a whole instead of seeking individual recognition;

…is self sacrificing and humble, always using their talents to help elevate a group;

…is one that not only develops budgets and strategic plans but also helps to develop people, giving them an opportunity to gain new skills and shine in their own way;

While this definition describes every Down Syndrome Indiana board member, there is one in particular that I would like to recognize and that is current DSI board President, Steve Simpson. Steve has been President since 2005 and announced his desire to resign from the Presidency earlier this year. During his term, the organization has come incredibly far! I remember being present at a board meeting several years ago when the question was raised that if IDSF were a car and you looked under the hood, would you really see a well oiled/ well maintained vehicle? Or, might you be disappointed with what you saw? I don’t have the answer to that question but, I am so proud to say that if that question were posed today, the answer would be an easy, we may not be a fine tuned machine yet but we are certainly always striving for constant improvement to reach that ultimate goal of excellence! Steve, has taken us from the Indiana Down Syndrome Foundation to Down Syndrome Indiana and what we are today. Where there was not one before, we now have a clear mission to enhance the lives of individuals with Down syndrome. Our strategic plan serves as the roadmap for the work that staff does. An organized internal structure, an amazing working/ functioning and evolving board, as well as the best volunteers any organization could ask for, serve as our compass. Our programs and successful events, like our Holiday Party and Summer Picnic, where families come together and make needed connections serve as the vehicle to get us where we want to go. In short, Steve has helped develop DSI into a sound and professionally run organization that truly believes in enhancing the lives of individuals with Down syndrome. He is absolutely to be commended for everything he has done. So, to my mentor, my coach, my supervisor and my friend, ….. Thank you!

During the November board meeting, our board voted in a new President, Jeff Huffman, that will take office beginning January 1st, 2010.

Steve, again you are leaving us in a place that is much better than when you joined it. In my opinion, that is the true mark of a leader. It is my hope that DSI can continue the legacy and the charge that you are leaving with us.

Dedicated to enhancing the lives of individuals with Down syndrome,

Lisa Tokarz-Gutierrez, Executive Director

Tis the Season to be thankful...

2009-12-03T11:56:00.000-08:00

I would like to take a moment to express my sincere gratitude to the Down Syndrome Indiana 2009 Buddy Walk® sponsors. Our wonderful event could not have been possible without your continued support and dedication. The 2009 sponsors were as follows:

The Russell and Natalie Best Charitable Fund
WISH TV 8/MY WNDY 23
Gordon Plumbing and Indy Portables
Hilton
Kroger
Montgomery Aviation
The Lyle Foundation
Beaty Construction
Carmel Pediatrics
First Class Lawncare
Irrigation Plus
Riley Children’s Hospital
Dr. Carol McKown, DDS
Midwest Orthotics
Noble of Indiana
WestPoint Financial Group
Speech Pathology Services
Univar

Again, thank you for all you do to support our families!

Dedicated to enhancing the lives of individuals with Down syndrome,

Lisa Tokarz-Gutierrez, Executive Director

Here we grow again....

2009-11-20T09:14:00.001-08:00

Here we grow again….

I am so excited to announce some more wonderful changes here in the Down Syndrome Indiana office! First of all, I would like to welcome our newest parent group called Raising Special Kids Down syndrome support group which will serve the Muncie, IN area. This parent group will meet on the 2nd Tuesday of each month from 6pm to 7pm at Hillcroft Services, 114 East Streeter Avenue in Muncie, IN 47303. In addition to the parent support group meeting, there will be educational programming for the children which will be lead by professionals in the fields of Occupational Therapy, Physical Therapy and Speech Pathology. For more information, please feel free to contact the DSI office at 317-925-7617 and speak with Stephanie Glowner or contact Debbie McCoy at slaterjomc@gmail.com.

I am pleased to name Stephanie Glowner as Parent Support and Education Coordinator. As PS&E Coordinator, Stephanie will be the main contact for our families in need of support as well as the main contact for our parent group chairs and parent groups in general. Stephanie is the mother of Katy and brings a wealth of personal experience and warm hearted humor to the position. It truly brightens the office to have Stephanie on staff and I have no doubt that our families who have had contact with her feel the same way. Rachel Wood, DSI Outreach Coordinator will now be coordinating the 2010 Buddy Walk which will be held on Saturday, October 23, 2010! Rachel’s background in event planning has made the decision to bring the Buddy Walk ® Coordinator position in house a no-brainer. The first Buddy Walk® Committee meeting will be on January 24th. Anyone is welcome to serve on the Buddy Walk® Committee. If you are interested, please e-mail Rachel at buddywalk@dsindiana.org for more information.

I would also like to extend a warm welcome to the newest member of the DSI staff team, Amanda Congrove, DSI Director of Resource Development. Amanda has a Master’s degree in Philanthropic Studies and a certificate in Nonprofit Management from the Center on Philanthropy at IUPUI. She has previous experience working for WFYI and Special Olympics Indiana as a fundraiser. One of the qualities that I love about Amanda is that philanthropy, volunteering and serving others, is a value that she believes in and demonstrates in her everyday life. Because of her fundraising and nonprofit management skills coupled with her belief in inclusion and acceptance, I believe she will excel in her new position and hope that all of you extend the same warm welcome to her that you have extended to the current staff when we joined DSI.

I hope you have a happy, healthy and prosperous holiday season.

It is my pleasure to serve you!

Lisa Tokarz-Gutierrez, Executive Director

October is National Disability Employment Awareness Month

2009-10-29T07:42:00.000-07:00

Since October is National Disability Employment Awareness Month I thought I would share the following video with you. This video tracks a day at work for Laura Lee. Laura is a young woman with Down syndrome and a recent graduate of The Life Program at George Mason University. Laura is now happily beginning her career at The World Bank in the metro Washington DC area.

http://masonlife.gmu.edu/photo/life_video_laura/

Colleges and Universities across the country are beginning to offer post secondary educational programs that lead to increased employment opportunities for people like Laura Lee. This is very exciting as we are now beginning to change the focus from a “job” to a “career” and recognizing the college experience as one more choice/option for normalizing experiences for young adults with developmental disabilities.

I hope you enjoy this video as much as I did!

D.A.D.S. Hayride on the 24th!

2009-10-22T05:40:00.000-07:00

Howdy 'yall!

Just a quick reminder to dust off your cowboy boots, grab your warmest sweater (that you don't mind getting a little toasted marshmallow goo on), and plan your Saturday afternoon with all your friends from Down Syndrome Indiana and D.A.D.S. at the Annual Hayride!As you can all plainly see, we've been blessed with another BEAUTIFUL fall here in Indiana! And there aren't many places better to enjoy it from than Kyle Spencer's scenic berry farm and pumpkin patch up in Noblesville. We'll have all the fixins for a perfect fall day on the farm: hotdogs, chips, hot apple cider & hot chocolate, popcorn balls and all kinds of other fun fall goodies. The kids can decorate their own pumpkin, jump in the bounce-house, take part in the "Skeleton Relay", or just sit and enjoy the season by our roaring bon fire. And of course, it wouldn't be a hay ride without... a Hay Ride! The whole family can jump up into the Spencer's wagon and take a cruise around the farm behind the tractor.While this is a DADS sponsored event, it is an event for EVERYONE. Even if DAD can't make it, Moms & kids and friends are all welcome to come enjoy the day!The fun starts at 3:00 pm this Saturday, Oct. 24th and lasts till 7:00 pm.The location is the same as the previous years:
Spencer's U-Pick Farm
7177 E. 161st Street
Noblesville, IN

http://maps.google.com/maps?f=q&source=s_q&hl=en&geocode=&q=7177+E.+161st+Street++++++Noblesville,+IN&sll=37.0625,-95.677068&sspn=61.669968,120.849609&ie=UTF8&hq=&hnear=7177+E+161st+St,+Noblesville,+Hamilton,+Indiana+46062&t=h&z=17We'll

See y'all there!!-Ted Scofield Hayride DAD

Because this hayride requires lots of gettin' ready. We like to know how many of you plan to attend.Please contact the DSI office to let us know you'll be there:e-mail at: <register@dsindiana.org>phone at: 317-925-7617Thanks!!-Ted

Park Tudor Boys Tennis Team wins Award for Volunteer Service

2009-10-03T06:56:00.000-07:00

Players from the Park Tudor Boys Varsity and Junior Varsity tennis teams will be receiving the Bronze Level President’s Volunteer Service Award for initiating a permanent seasonal tennis program for Down Syndrome Indiana Organization families. In partnership with Park Tudor School, tennis lessons are offered by the players throughout the fall free of charge for Down Syndrome Indiana families interested in learning the sport. “It has been a fun experience for all of us and we just love the kids”, says Brendan Tannenbaum.

The President’s Council on Service created the President’s Volunteer Service Award program as a way to thank and honor Americans who, by their demonstrated commitment and example, inspire others to engage in volunteer service. Tennis Team Captains, Sam Miles and Kishan Shah, are the official liaisons between Down Syndrome Indiana and the Park Tudor tennis team. The volunteers participating this fall received the Bronze Level Award of 50 plus hours of service include:

Sam Clarke
Sam Geier
Scott Kincannon
Jack Miles
Sam Miles
Matt Neal
Jack Rardon
Kishan Shah
Brendan Tannenbaum
Nick Tannenbaum

“The Park Tudor tennis players have created a fun experience for the kids, with physical fitness, team building and some inventive tennis games”, says a Park Tudor tennis Mom.

Spring tennis clinics will commence again in April with the Park Tudor girls tennis team joining the boys to conduct the clinics.

A huge thanks to the Park Tudor Varsity and Junior Varsity Teams for organizing this wonderful opportunity!!!!!!!!!!!!!!!1

How to Raise $250 in Ten Days

2009-09-24T07:31:00.000-07:00

The Down Syndrome Indiana Buddy Walk (R) is on October 10, 2009! Visit http://www.dsindiana.org/ and click on "Buddy Walk" today to sign up a team or to walk on Saturday!

Need some suggestions to raise money...try this idea from our friends in Kansas City:

HOW TO RAISE $250 in Only Ten Days Day

Make a $25 donation =$25
Ask your significant other for $15 contribution= $40
Ask your mom or dad for $15 contribution =$55
Ask a friend for a $15 contribution= $70
Ask your boss for $25 contribution= $95
*Don't forget to ask if your company has a
matching gift program
Ask 3 co-workers for $15 contribution =$140
Ask your sister or brother for $15 contribution= $155
Ask your in-laws for a $15 contribution= $170
Ask 2 neighbors for $15 contribution =$200
Ask a business owner of somewhere you spend
money for a $50 contribution =$250

Thanks, again, for all of your hard work in helping us raise funds! Your contributions will go a long way in helping Hoosiers with Down syndrome and their families!

Regards,

Jen Smith'09 Buddy Walk Coordinator

Raise money for Down Syndrome Indiana using Good Search

2009-09-10T11:26:00.000-07:00

Here's a new easy way to raise money for your favorite cause, Down Syndrome Indiana. Just start using Yahoo! powered GoodSearch.com as your search engine and they'll donate about a penny to your favorite cause every time you do a search!

In addition, do all of your shopping through their online shopping mall, GoodShop.com, where you can shop at more than 900 top online retailers and a percentage of your purchases will go to the charity or school of your choice. You pay the same price as you normally would, but a donation goes to your cause!

Here's the web site — http://www.goodsearch.com. You can also read about GoodSearch in the NY Times, Oprah Magazine, CNN, ABC News and the Wall Street Journal.

Terry Allen and Walmart was the star of the last post. Can you guess this star?

2009-09-03T10:01:00.000-07:00

This star won the 2007 Citizenship Award from the ARC of Indiana and I cannot think of anyone that exemplifies the value of being a good citizen more than this star! She is a 22 year old with Down syndrome and she has volunteered more 200 hours with Down Syndrome Indiana. This star volunteers in the office every Wednesday. When she first began volunteering for the organization, I had her doing “light” work like labeling the books for the lending library and shredding the pile of papers that needed to be disposed of in a confidential manner. As I came to know this star, I realized that she wanted more meaningful work where she could be sharpening her skills as well as contributing to the organization. It turns out that this star is great on the computer and very careful not to make errors or to thoroughly check that any errors have been corrected. This made this volunteer my right hand (wo)man for data entry. Until a new database was implemented, she was responsible for adding about 2,500 donors to the mailing list from our annual fundraising event called the Buddy Walk®. I honestly don’t know where I would be without this star. The most wonderful thing about her is that she comes to the office week after week just as enthusiastic about helping as she did the first time. She always tells me how happy she is to work at Down Syndrome Indiana. But the truth is, we are lucky to have her!

Not only does this star volunteer for DSI but, she also volunteers for Community North Hospital and Best Buddies Indiana as well as working part-time at Kohls and the YMCA.

Other ways that she exemplifies the meaning of a good citizen are to eat right, exercise regularly and to encourage others not to smoke. Stop smoking campaigns are a passion of this volunteers.

You know those posters, “Everything I Need to Know, I learned in Kindergarten”? Well this star is the one that inspired me to begin one entitled, “Everything I Need to Know I Learned from Down Syndrome”. This is some of what this star has taught me:

Manners matter.

Being polite is important.

Love what you do.

Share your dreams.

Share your lunch.

Remove all obstacles.

Greet the ones you love with a hug or just greet everyone with a hug.

Pray before you eat.

Include your loved ones in your daily prayers.

Do your best all the time.

Ask questions when you don’t know the answer.

Eat a balanced diet.

Exercise and make it fun.

Be honest.

Slow and steady wins the race.

Words can hurt feelings.

Always focus on what you do have and not on what you don’t have.

Accept it and move on.

Be courageous.

Jessica Green was the answer to the last post. Can you guess the star of this post?

2009-08-22T10:43:00.000-07:00

On Thursday, May 21st , 2009, Down Syndrome Indiana awarded this star and the New Albany Wal-Mart a Star Award for their outstanding efforts to advance employment opportunities for individuals with Down syndrome. This star views employment of individuals with a disability as a career changing opportunity and devotes much of his time to working with nonprofit and civic organizations. This star’s work is impressive because he wants to make sure that Wal-Mart not only hires individuals with a disability but also works with them to retain their position and to move up in the company; not just leave the challenge of long term advancement to “job coaches” from outside agencies.

This star has also led the effort to have Wal-Mart begin working with nationally known consultant, James Emmett to redesign technology at 3 Southern Indiana and 9 Kentucky Wal-Mart locations to make it more user friendly to its employees with a disability. James Emmett has also worked with such major corporations as Walgreens and Best Buy.

In addition to this, this star traveled to Washington D.C. in February 2009 and met with legislators to discuss the need for meaningful employment by individuals with a disability under the new ABLE legislation that is being proposed. He also attended a 3 day Affiliates in Action Conference to learn more about Down syndrome.

This star is a store manager for the New Albany Wal-Mart. He also serves on the board of Directors for the Down Syndrome Support Association of Southern Indiana (DSSASI). This star’s inspiration for his work on behalf of individuals with Down syndrome began with the hire of Mark Hublar, a 44 year old individual with Down syndrome that is employed full time by the New Albany store.

Can you guess this star?

2009-08-06T11:14:00.000-07:00

For the next couple of weeks, I would like to play a game called, Can you guess this star? Each week, I will post the bio of one of DSI’s Superstar volunteers and ask you to guess who it is. I am starting you out with an easy one. So here we go, can you guess this star?

First of all, Down Syndrome Indiana is extremely proud to count this star as a member of the Down Syndrome Indiana Board of Directors. She truly exemplifies the type of leadership that we are looking for in our board members. Not only does this star understand the work that the staff carry out but she volunteers in the office on Fridays and has offered many insights that have made the organization so much stronger! For example while volunteering to assemble new parent packets, this star asked why DSI didn’t offer transition packets for Self Advocates. It was a brilliant idea! DSI families would all benefit from the type of information that would be included in the transition packet, such as, information on independent living, financial resources, safety tips, etc. I am proud to say that because of this individual Down Syndrome Indiana has formed a new partnership with a local university and hospital to create the transition packet. Not only will the packet be helpful to the Down syndrome community but it will also be helpful to the entire disability community as well and let me tell you other organizations in Indiana are excited!

Down Syndrome Indiana encourages all adults with Down syndrome to volunteer in our office on a regular basis to gain skills that would be of benefit to them upon entering the work world. Yes, just volunteering in an office is great and helpful but, Down Syndrome Indiana wanted to be able to offer a product that its advocates could be proud of and show off to the community. The office also prides itself on listening to and valuing the ideas of its Self Advocate volunteers. This star suggested that Self Advocates be given the opportunity to write, publish and distribute their own newsletter; and so in 2008, the Self Advocate’s newsletter, Ups and Downs was born! The newsletter is by and for adults with Down syndrome. This is exactly in line with the mission of DSI, which is to enhance the lives of individuals with Down syndrome. This newsletter not only gives the advocates a voice, it also helps them gain skills as they are involved in the photography, proofreading, writing of the articles, layout and printing of the publication, etc. If they didn’t already have typing or computer skills, this is a chance for adults with Down syndrome to gain those skills a little at a time in a fun environment. Best of all, when reading the articles one learns just how much more alike each advocate they are than different!!!! Or one can learn just how amazing and persistent adults that have a disability really are!

Here are a list of this star’s accomplishments:

This star was in an inclusive educational environment from preschool through high school and was the first student in Washington Township, a school district in central Indiana, to ask for full inclusion which included asking for placement in her neighborhood school.

During high school This star worked and at Barnes and Noble/ Eddie Bauer/ and two advertising agencies and one radio station. She volunteered at the YMCA in childcare and also the Humane Society during High School.

She also was a member of the THEATRE OF INCLUSION for three years. This was a production put on during the art festival each fall. Dante Francesca was the Director and the troop was made up of individuals with and without challenges.

From high school This star had the opportunity to attend Marion College. She audited classes for one year and commuted from home. She took nutrition, singing, dance, stage production, and volleyball. She also attended dances and extracurricular events there.

From there This star started working for Advantage Medical in Carmel Indiana where she currently works.

She has received the CITIZENSHIP AWARD from Noble of Indiana.

She has published an article in the magazine ABILITY.

She has attended the Building Leadership Workshop sponsored by the Indiana Institute on Disability and Community in Bloomington, Indiana.

She is a member of the ARC of Indiana.

She is a member of the National Down Syndrome Congress and was recently elected to the new Self Advocate position on the NDSC Board of Directors.

She attended the Affiliates in Action Coalition in Washington, DC and testified on behalf of two bills that effected individuals with disabilities.

She speaks publicly on the rights of individuals who have special needs.

She was responsible for getting the crosswalk buttons installed at the intersection where she lives: 86/Ditch--She wrote her representative.

Can you guess who, “this star” is?

I want to know what you think!!!!

2009-07-31T09:21:00.000-07:00

I want to hear from you! Please take a moment to fill out the survey that is now posted on the Down Syndrome Indiana website at: http://www.dsindiana.org/ParentSurvey.php.

Your input is essential to making sure that Down Syndrome Indiana continues to offer programs that are relevant and desired by its families all while carrying out its important mission of enhancing the lives of individuals with Down syndrome.

In the past, you told us that the DSI Buddy Walk® website was difficult to use. So the organization switched to a new online giving program, First Giving. DSI was told that its website needed to be easily accessible to new parents. DSI then revamped and launched an entire brand new website; please visit it at www.dsindiana.org. You said you wanted more information about events and DSI offered a quarterly newsletter, monthly event calendars and an annual report. You told us you wanted to hear more about the programs and services offered and less about fundraising . DSI expanded its programs dramatically. Some of the new programs include Hand2Hand, Cuenta Conmigos, the Minority Family Down Syndrome Network (MFDSN), the Lafayette Area Down Syndrome organization (LADSO), the Self Advocates Program and coming this fall an inclusion specialist program for schools and transition packets for adults with a disability that are transitioning from high school into the adult world. A brand new and extremely exciting endeavor that DSI is embarking on is to work with local colleges to establish a quality postsecondary education program in Indiana for adults with a developmental disability (we hope you feel you are hearing less about the fundraising!).

All of the above programs are a direct result of what our families have told us is important to them during our last strategic planning process. I don’t just want to hear what is important to you every couple of years though. I always want to know what is important to our families so please feel free to fill out the online survey now or whenever you have a wonderful idea that you would like to share with DSI. I want this to be an ongoing communication tool that you can use to improve Down Syndrome Indiana.

I look forward to hearing from you! Again, please feel free to fill out the survey at: http://www.dsindiana.org/ParentSurvey.php.

Hand2Hand Program to help local families

2009-07-24T11:01:00.000-07:00

Parent Education and Support Committee launches Hand 2 Hand Program!

The Parent Education and Support Committee is proud to announce a new program that will benefit families in the Indianapolis Central Indiana area. It is called Hand 2 Hand. This program will help to provide those in need with gently used clothing, furniture, children’s toys and adaptability items free of charge. If you have a child with Down syndrome or a disability and are in need of any of these items, please email Jenni at hand2hand4indy@aol.com.

Three examples of how this program can work are as follows:

1. A child is unexpectedly hospitalized. The family can request clothing, especially pajamas that snap down the front to accommodate necessary medical procedures while wearing more comfortable clothing.

2. A self advocate (adult with Down syndrome) moves into a new apartment and is in need of furniture and dishes to furnish the apartment. DSI can help!

3. A single parent has a child with Down syndrome and has a serious financial need. The family can request items from Down Syndrome Indiana such as gently used clothes that have already been altered to fit a child with Down syndrome.

How does it work?

If you are in need of any of these items, please just contact Jenni at hand2hand4indy@aol.com or call her directly at 317-835-2492.

Storage space for this program was generously donated by D and D’s Strictly Storage.

Let’s all help the disability community be portrayed in a much more positive light!

2009-07-16T09:54:00.000-07:00

Recently (and of course in the past too), there have been well meaning articles written about individuals with Down syndrome or any disability for that matter where instead of language that positively portrays the individual, the media will use the words, “afflicted with” or, “suffers from” instead of focusing on the ability of the individual. Many parents are just tired of working so hard to have their children included in school and the community, etc. only to have one newsletter article make it feel like all their hard work over the years was in vain and they still have so far to go. Let’s all help the disability community be portrayed in a much more positive light! When writing about individuals with a disability, here are some simple guidelines to follow courtesy of the Indiana Governor’s Council for People with Disabilities:

Guidelines for Reporting and Writing About People with Disabilities

When writing, it’s important to be concise, particularly in journalism. However, sometimes the effort to limit wordiness leads to inappropriate references to people with disabilities. The following guidelines explain preferred terminology and reflect input from more than 100 national disability organizations. These guidelines have been reviewed and endorsed by media and disability experts throughout the country. Although opinions may differ on some terms, the guidelines represent the current consensus among disability organizations. Portions of the guidelines have been adopted into the “Associated Press Stylebook,” a basic reference for professional journalists.

DO NOT FOCUS ON DISABILITY unless it is crucial to a story. Avoid tear-jerking human interest stories about incurable diseases, congenital impairments or severe injury. Focus instead on issues that affect the quality of life for those individuals, such as accessible transportation, housing, affordable health care, employment opportunities and discrimination.

PUT PEOPLE FIRST, not their disability. Say “woman with arthritis,” “children who are deaf” or “people with disabilities.” This puts the focus on the individual, not the particular functional limitation. Despite editorial pressures to be succinct, it is never acceptable to use “crippled,” “deformed,” “suffers from,” “victim of,” “the retarded,” “the deaf and dumb,” etc.

DO NOT SENSATIONALIZE A DISABILITY by writing “afflicted with,” “crippled with,” “suffers from,” “victim of” and so on. Instead, write “person who has multiple sclerosis” or “man who had polio.”

DO NOT USE GENERIC LABELS for disability groups, such as “the retarded” or “the deaf.” Emphasize people, not labels. Say “people with mental retardation” or “people who are deaf.”

EMPHASIZE ABILITIES, not limitations. For example:
· Correct: “uses a wheelchair/braces” or “walks with crutches”
· Incorrect: “confined to a wheelchair,” “wheelchair-bound” or “crippled”
Similarly, do not use emotional descriptors such as “unfortunate,” “pitiful” and similar phrases.

Disability groups also strongly object to using euphemisms to describe disabilities. Terms such as “handi-capable,” “mentally different,” “physically inconvenienced” and “physically challenged” are considered condescending. They reinforce the idea that disabilities cannot be dealt with directly and candidly.

SHOW PEOPLE WITH DISABILITIES AS ACTIVE participants in society. Portraying persons with disabilities interacting with people without disabilities in social and work environments helps break down barriers and open lines of communications.

DO NOT PORTRAY SUCCESSFUL PEOPLE WITH DISABILITIES AS SUPERHUMAN. Many people with disabilities do not want to be “hero-ized.” Like many people without disabilities, they wish to be fully included in our communities and do not want to be judged based on unreasonable expectations.

DO NOT IMPLY DISEASE when discussing disabilities that result from a prior disease episode. People who had polio and experienced after-effects have a post-polio disability. They are not currently experiencing the disease. Do not imply disease with people whose disability has resulted from anatomical or physiological damage (e.g., person with spina bifida or cerebral palsy). Reference to the disease associated with a disability is acceptable only with chronic diseases, such as arthritis, Parkinson’s disease or multiple sclerosis. People with disabilities should never be referred to as “patients” or “cases” unless their relationship with their doctor is under discussion.

LISTED BELOW ARE PREFERRED WORDS THAT REFLECT A POSITIVE ATTITUDE IN PORTRAYING DISABILITIES:

· Brain injury. Describes a condition where there is long-term or temporary disruption in brain function resulting from injury to the brain. Difficulties with cognitive, physical, emotional or social functioning may occur. Use “person with a brain injury,” “woman who has sustained brain injury” or “boy with an acquired brain injury.”

· Cleft lip. Describes a specific congenital disability involving lip and gum. The term “hare lip” is anatomically incorrect and stigmatizing. Use “person who has a cleft lip” or “a cleft palate.”

· Deaf. Deafness refers to a profound degree of hearing loss that prevents understanding speech though the ear. “Hearing impaired” and “hearing loss” are generic terms used by some individuals to indicate any degree of hearing loss – from mild to profound. These terms include people who are hard of hearing and deaf. However, some individuals completely disfavor the term “hearing impaired.” Others prefer to use “deaf” or “hard of hearing.” “Hard of hearing” refers to a mild to moderate hearing loss that may or may not be corrected with amplification. Use “woman who is deaf,” “boy who is hard of hearing,” “individuals with hearing losses” and “people who are deaf or hard of hearing.”

· Disability. General term used for a functional limitation that interferes with a person’s ability to, for example, walk, lift, hear or learn. It may refer to a physical, sensory or mental condition. Use as a descriptive noun or adjective, such as “person living with AIDS,” “woman who is blind” or “man with a disability.” “Impairment” refers to loss or abnormality of an organ or body mechanism, which may result in a disability.

· Disfigurement. Refers to physical changes caused by burn, trauma, disease or congenital problems.

· Down syndrome. Describes a chromosome disorder that usually causes a delay in physical, intellectual and language development. Usually results in mental retardation. “Mongol” or “mongoloid” are unacceptable.

· Handicap. Not a synonym for disability. Describes a condition or barrier imposed by society, the environment or by one’s self. Some individuals prefer “inaccessible” or “not accessible” to describe social and environmental barriers. “Handicap” can be used when citing laws and situations, but should not be used to describe a disability. Do not refer to people with disabilities as “the handicapped” or “handicapped people.” Say “the building is not accessible for a wheelchair-user.” “The stairs are a handicap for her.”

· HIV/AIDS. Acquired immunodeficiency syndrome is an infectious disease resulting in the loss of the body’s immune system to ward off infections. The disease is caused by the human immunodeficiency virus (HIV). A positive test for HIV can occur without symptoms of the illnesses, which usually develop up to 10 years later, including tuberculosis, recurring pneumonia, cancer, recurrent vaginal yeast infections, intestinal ailments, chronic weakness and fever and profound weight loss. Preferred: “people living with HIV,” “people with AIDS” or “living with AIDS.”

· Mental disability. The Federal Rehabilitation Act (Section 504) lists four categories under mental disability: “psychiatric disability,” “retardation,” “learning disability” or “cognitive impairment” is acceptable.

· Nondisabled. Appropriate term for people without disabilities. “Normal,” “able-bodied,” “healthy” or “whole” are inappropriate.

· Seizure. Describes an involuntary muscular contraction, a brief impairment or loss of consciousness, etc., resulting from a neurological condition such as epilepsy or from an acquired brain injury. Rather than “epileptic,” say “girl with epilepsy” or “boy with a seizure disorder.” The term “convulsion” should be used only for seizures involving contraction of the entire body.

· Spastic. Describes a muscle with sudden abnormal and involuntary spasm. Not appropriate for describing someone with cerebral palsy or a neurological disorder. Muscles, not people, are spastic.

· Stroke. Caused by interruption of blood to brain. Hemiplegia (paralysis on one side) may result. “Stroke survivor” is preferred over “stroke victim.”

The Governor’s Council for People with Disabilities would like to acknowledge the Research and Training Center on Independent Living at the University of Kansas for the usage rights of the “Guidelines.”

Contact your US House member today and ask them to cosponsor H.R. 2740, the IDEA Fairness Restoration Act

2009-07-09T04:42:00.000-07:00

Your help is needed to restore fairness to the IDEA! PLEASE contact your US House member today and ask them to cosponsor H.R. 2740, the IDEA Fairness and Restoration Act.

This bill was introduced in the last legislative session and now is being reintroduced. Ask friends, colleagues, clients, and family members to call too. It will only take a few minutes. If you can't make the call today, please call as soon as possible afterwards.

Dial 202-224-3121 (TTY 202-225-1904). This is Congress' main switchboard. Ask for your Representative's office. When you are connected, ask for the Aide who handles education or disability. If you get voicemail, please leave a message. Tell them you are a constituent and would like the Congressperson to co-sponsor H.R. 2740, the IDEA Fairness Restoration Act. You can find out who your Representative is by going to http://capwiz.com/ndss/dbq/officials/?command=local.

Background:
In the pursuit of a free and appropriate public education for their children with disabilities, parents and caregivers may have issues with their local school that are difficult to resolve. Sometimes, the courts become involved in settling these very difficult cases. But, this can come at great expense to parents and caregivers. When the Individuals with Disabilities Education Act (IDEA) was amended in 1986, it authorized a judge to award parents or caregivers attorney's fees if the court found that a child was denied an appropriate education by the public school. The Conference Report accompanying that law states that, in those cases judges could award expert witness fees and reasonable costs of tests or evaluations necessary for preparation of a parent's case.

Unfortunately, in 2006 the US Supreme Court decided that the expert witness fees were not specifically called out in the statute and therefore parents were not entitled to reimbursement of these fees even when they prevailed in court. Legislation has been introduced in the US House of Representatives to restore the IDEA to the intent of congress when they amended the IDEA.
If you have questions, please contact Ricki Sabia at rsabia@ndss.org or Susan Goodman at Susan@ndsccenter.org

On behalf of the Down Syndrome Indiana, the DSI Governmental Affairs Committee and families everywhere, I would like to thank you for your participation!

Reasons to Celebrate: Kennedy-Brownback gets funded and Indy is ranked #1 in Accessibility

2009-07-02T16:57:00.000-07:00

Great news! The Kennedy-Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act gets funded to the tune of $820,000 over the next four years. This is what many Ds organizations advocated for when we made our trip to Washington DC earlier this year. According the National Down Syndrome Society and the National Down Syndrome Congress, “The funding "seeks to increase patient referrals to providers of key support services for women who have received a positive test diagnosis for Down Syndrome, Spina Bifida, Dwarfism and other prenatally or postnatally diagnosed conditions; strengthen existing networks of support through outreach programs; improve available data by incorporating up-to-date, evidence-based information into existing state programs for birth defects and prenatally or postnatally diagnosed conditions and ensure that patients receive information about the accuracy of the diagnostic tests for the conditions. Provisions also include the establishment of or increased access to a resource hotline." The actual bill was signed into law by former President Bush on October 8, 2008. However, it did not come with any Congressional appropriations to enact the recommendations until now.

This has the Down syndrome community excited because we want our families to be provided with up to date and accurate information about raising a child with Down syndrome. It is currently estimated that 90% of women who receive a prenatal diagnosis of Down syndrome terminate the pregnancy. This is not a prolife or prochoice issue, again, this is just making sure that women are presented with up to date and accurate information. For example, do families know that there is a waiting list to adopt a child with Down syndrome? If they knew this, would they rethink abortion? Are mothers really still being told that their child will not know how to count change or ever get a job? Some are and we want to make sure that parents have the opportunity to learn more about Down syndrome and the joys of raising or even of knowing individuals with Down syndrome because those statements are simply not true!

For a change let’s thank our congressional representatives for making this happen!

Also, did you know that in April 2009, Indianapolis, Indiana was chosen as the winner of the Accessible America Competition? The National Organization on Disability (NOD) chose the city as a national model for, “its focus on disability issues and successful design of programs, services and facilities that are accessible for citizens and visitors that have disabilities”. Some say we still have a long way to go. What do you think?

How is Indiana doing in providing a free and appropriate public education for students with disabilities?

2009-06-19T10:38:00.000-07:00

I would like to share with you information from the Down Syndrome Indiana Governmental Affairs Committee Chair, Tom Milvert. I think his message is more important than anything I have to say today...

Every year the US Department of Education assesses the performance of how well each state is doing in ensuring that students with disabilities receive a free and appropriate public education. The assessment is based on a State Performance Plan (SPP) that each state department of education submitted to the US Department of Education after the Individuals with Disabilities Education Act (IDEA) was reauthorized in 2004.

So how is Indiana doing in providing a free and appropriate public education for students with disabilities?

The latest state assessment results have been published and Indiana is…..

At the absolute bottom of all educational jurisdictions that were assessed. And to make it worse we have been at the bottom for three consecutive years. Below is a summary of the results:

---------------------------
Following is each state's performance in meeting the requirements of IDEA Part B, which serves students with disabilities, ages 3 through 21:

MEETS REQUIREMENTS-Alabama, Alaska, Arkansas, Arizona, California, Commonwealth of the Northern Mariana Islands, Connecticut, , Hawaii, Idaho, Iowa, Kansas, Maryland, Michigan, Minnesota, Mississippi, Missouri, Montana, North Carolina, North Dakota, New Jersey, Ohio, Oklahoma, Oregon, Republic of Marshall Islands, South Dakota, Utah, Virginia, Washington, Wisconsin and Wyoming

NEEDS ASSISTANCE-Delaware, Guam, Pennsylvania, Puerto Rico, Texas, Virgin Islands and Vermont

NEEDS ASSISTANCE (two consecutive years)-American Samoa, Federated States of Micronesia , Florida, Georgia, Illinois, Kentucky, Massachusetts, Maine, Nebraska, New Hampshire, Nevada, New Mexico, New York, Palau, South Carolina, Tennessee and West Virginia

NEEDS INTERVENTION-Bureau of Indian Education, Louisiana and Rhode Island

NEEDS INTERVENTION (three consecutive years)-Colorado, District of Columbia and Indiana

[Ref: US Department of Education]
------------------------------

To read more details follow this link:

http://www.ed.gov/policy/speced/guid/idea/monitor/factsheet09.html

Our children in Indiana deserve better than last place. For to long, the Indiana Department of Education has failed to provide the leadership and has failed to provide the guidance and accountability that is required to ensure that every student, in every school, in every community, in Indiana receives the special education services and supports that they are entitled to. It is time for change and time for accountability in Indiana. Our children deserve better than “free”; they deserve the appropriate education that the IDEA guarantees.

Over the next few days and weeks I will provide some additional information on this topic and together we can form a plan to address this as a unified community.

Please let Tom know if you have any questions on this topic.

Thanks,
Tom Milvert
Down Syndrome Indiana
Governmental Affairs Committee Chair

Thanks for sharing Tom!!!!

On coming together...

2009-06-11T12:08:00.000-07:00

On coming together…

Sam Walton, founder of Wal-Mart once said, “Individuals don’t win. Teams do. “ Well, let me tell you about the great great teamwork that I see happening in Indiana to enhance the lives of individuals with Down syndrome and disabilities in general:

· There is now an active Government Action Committee in Indiana that meets via conference call monthly to discuss public policy initiatives that affect our community. This committee is made up of Down syndrome organizations from throughout the State of Indiana that want to form a more unified movement. In addition to giving us a stronger voice and the ability to mobilize quickly on important issues, the committee is also putting together a map of what counties each organization covers, identifying gaps and then coming up with a plan to make sure all of Indiana has access to the information and support that it needs! Ever hear of the Autism Health Insurance mandate? Well, hopefully through the work of this committee you will see a Down syndrome Health Insurance mandate as well.

· I just got off the phone with an amazing group of individuals representing Down Syndrome Indiana, the ARC of Indiana, the National Down Syndrome Society, the Autism Society of Indiana and the Indiana Institute on Disability and Community to improve post secondary education options for individuals with developmental disabilities in Indiana. There will be a meeting on July 28th, 2009 that is open to everyone to talk about this wonderful topic. The meeting will be held at St. Lukes United Methodist Church in Indianapolis from 6 to 8pm and everyone is invited to attend!

· A group of Master of Public Health students at IUPUI along with Riley Children’s Hospital are teaming up create a transition packet for individuals with Down syndrome that are transitioning from high school into the adult world. This will help to fill an unmet need in the community for more information for adults with Down syndrome.

· The Autism Society of Indiana is working to identify the needs of minorities with a disability and what type of support groups would be helpful to these families. In fact, the Autism Society and Down Syndrome Indiana are also combining the Hispanic parent groups during the summer months. Many of the issues that are discussed during parent group meetings are the same even though the disability may be different therefore it makes sense to try to reach a broader population instead of segregating this growing community.

· Get ready for green office space for nonprofits in Indianapolis! There is a committee that will begin meeting regularly to create a green office building for health related nonprofits. The focus of the building will be a healthy workplace and the goal is to create a building where nonprofit organizations can share resources to further their mission. Everything will be designed with the environment and easy access for individuals with disabilities in mind. How exciting is that?! Look for it in 2010 or 2011! (You guessed it, DSI gets to be part of the planning process.)

And those are just the tip of the iceburg! I am so proud of the Down syndrome community and disability community as a whole for really coming together to enhance the lives of , well, everyone! As Harry Truman once said, “ It is amazing what you can accomplish if you do not care who gets the credit.” Keep up the great work everyone!!!! Until next Thursday….

On what is important to self advocates...

2009-06-04T10:36:00.000-07:00

Down Syndrome Indiana is in the process of working with several partners to create and distribute a transition packet to families that have an adult with Down syndrome transitioning from high school into the work world. On Tuesday, June 2nd, we held a mock focus group session to find out more about our self advocates and what is important to them during the transition from high school to the adult world. A huge thank you to all the self advocates that participated in our session on Tuesday and also, a huge thank you to the students at IUPUI and the faculty at Riley Children’s Hospital for making the evening possible. Now I would like to share with you what we learned:

On what is important for advocates to do for themselves…

Working is very important whether it be at a paid position or volunteer position.
They would like to live on their own in an apartment or home (but close to their parents).
They need assistance with money management and billing.
They want to have the freedom to be in a relationship with whom they choose.

On when to tell your parents you are in a relationship…
When they are in a good mood!

On what our advocates would like to teach the younger generation….
Self determination
Inclusion
How to cook!
That it is more important to look at abilities than a disability.

On goals…
To be on television

On Fitness and nutrition….
Wii Fit is a favorite!
Parents are the anti-drug.
Nutrition, weight management and healthy eating are important to all of our advocates.
Smoking and drugs are bad.
When it comes to drinking, it is not good but if you would like to know our favorite drinks just scroll down a little more because we are not about sharing family secrets.

On safety…
Don’t open doors for strangers.
Don’t take rides from strangers.
It is important to have emergency contact information available at all times.

On Heroes…
Chris Burke

On our favorite drinks…
Margaritas (not that we drink but if we did)
Green beer on St. Patrick’s day (not that we drink but we are over 21)
Bud Light (just sayin’ it’s a good drink, if we were to drink)

On what they do for fun…
Sports
Talk to friends
Volunteer at Down Syndrome Indiana (yes, it is fun, I am not making it up!)
Work
Cooking class
Swim
Bowl
Make (or was it eat) chocolate chip cookies
Go to the movies
Spend time with their families

On what the heck the meeting was about…
“Sex, drugs and beer.”

And the #1 most important item to our self advocates is: their family.

We also asked their parents what they wished they would have known when their adult children were transitioning from high school into the adult world but that will be in another blog because it’s not as entertaining! Or maybe it is, you will just have to visit again next Thursday to find out….

Everything I Need to Know I Learned from Down syndrome

2009-05-28T08:16:00.000-07:00

Welcome to my debut into the world of blogging!

Robert Fulghum has written a book entitled, “Everything I Need to Know, I Learned in Kindergarten”. Not to copy off of him, but for the past couple years, I have been compiling a list of the most helpful items I have learned in life as well. This may not surprise you but I realized that my list has all come from Down syndrome. Each quip has a story behind it. Some hilarious, some heart breaking and some that just are what they are. So, for my first blog, I present to you:

Everything I need to know I learned from Down syndrome:

Manners matter.

Being polite is important.

Love what you do.

Share your dreams.

Share your lunch.

Remove all obstacles.

Greet the ones you love with a hug; or when in doubt just greet everyone with a hug.

Pray before you eat.

Include your loved ones in your daily prayers.

Do your best all the time.

Ask questions when you don’t know the answer.

Eat a balanced diet.

Exercise and make it fun.

Be honest.

Slow and steady wins the race.

Words can hurt feelings.

Don’t enable bad behavior.

Always focus on what you do have and not on what you don’t have.

Accept it and move on.

Be Courageous.

Tell people what you need and your needs will be met.

Plan your day in advance.

Focus on ability not disability.

Routine is very important.

So is flexibility.

It’s all about portion size.

Little details matter.

Food and balloons really can make some people happy.

Do not overpromise and under deliver.

Why would anyone want a cure for Down syndrome?

I may not have any friends if it weren’t for Down syndrome.

Everyone is really good at something.

Set high goals.

Set high expectations.

Talking to oneself is a very productive way to work through things.

People touched by Down syndrome are just so real.

Spell check is awesome!

Never underestimate how much individuals with Down syndrome know about the internet.

Never underestimate how much individuals with Down syndrome know, period.

Never underestimate how much individuals with a disability know, period.

Never underestimate anyone, period.