Bob Seger still Rocks at 61

We had the awesome opportunity to see Bob Seger in concert here in Indy Saturday night. We lucked out and snagged some tickets about 30 feet from stage right.

I can assure you that Bob Seger can still rock even if he is 61. He came out on stage in jeans, black t-shirt and black loafers and showed everyone "Rock and Roll Never Forgets" for over two hours. Sang all the great song's from the past and some from the new album and if you love Seger and have not heard the new tracks yet you must....They are awesome. The great thing about sitting so close was you could really see how much fun Bob was having entertaining the crowd that varied from teenagers to the top of the AARP crowd. What a show.....What memories it brought back of days gone by....

What more can I say...If you are thinking about catching his tour...Get your tickets now even if you have to go thru a broker and pay to much....I assure you after the show you will think that was money damn well spent.....

Gotta run now and re-load my CD player in the car with Seger, Styx and Mellencamp....Oh heck I think I will throw in a Sinatra also...

Be Cool

Update

Hey Everyone

Please see the post below but keep in mind the post I am referring to is "Open Letter" as B Strong has updated his blog since my post.

Have an awesome day.

Just want to refer you to another Blog today

Hey All

Many things to write about today but I am going to wait. If you showed up here today scroll down the right side of my blog to the links. Click on Down syndrome life and read the latest post by an awesome Dad.

Mike Sodrel vs. Barron Hill - Indiana's 3rd District

I am always amazed during the silly season how people from Washington DC use television to teach us about Hoosier Values. Nothing like the Republican and Democrat national committee's all the sudden understanding any values other then special interest groups and their money.

The interesting thing about this is the advertising we are being bombarded with on Indianaoplis television on the 3rd District race. Why is this interesing? Well my guess would be 95% of the Indy viewing area can't vote for either candidate because they represent Southern Indiana not Indianapolis. But the folks from DC are spending more money then I can imagine on these ads.

I don't know Mike Sodrel or Barron Hill nor can I vote for either, but since they are both from Indiana my bet is both of these gentlemen are probably pretty darn good guys. My guess is either one would try to make the best decesions they can for the people of Indiana if elected and they followed their Hoosier values and their gut instincts. But all we hear about is slam, slam and more slam.....all the polls say we as the public don't like negative ads so why do we let them get away with it. We can't find anything better to spend all this money on? I know I can.

But that is the problem in Washington today. Nobody votes based on any kind of value or gut insticnt. How do they vote? The do what they are told not by the people that elect them but by the goofballs in DC that run the R's and the D's, they same people that generate all this partisan political crap we are bombarded with everyday.

When was the last time anything really got done in DC? Well we did go to Iraq and the only thing good I can think of from that is Haliburton stock is stronger. Now I am not second guessing either side on this but only stating the only positive I can find about the whole mess.

Bottom line is when are we the American public going to finally say enough is enough and tell or Indiana delegation that we will not tolerate any more of this negative stuff. Cancel the ad's and stop the name calling......take the candidates running and get out in the district and knock on doors and let us meet you and talk to you and make a decesion based on what we think you stand for not what the goofballs in DC tell us.

Come on Hoosiers deserve better.

University of Findlay Oiler Football

It's been awhile since I have updated the tales but the time has come.

I proudly wore the black and orange of the Findlay College Oiler's from 1981-1984 and carry with me today many of the lessons learned from being part of one of the best teams in NAIA football history. Much of who I am today was honed on the practice field, the field of Donnell Stadium and the many fields of the Hoosier Buckeye conference were the Oilers ruled. Or maybe it was from getting my head bashed in for the first three years being part of the scout squad. Anyway.

When the time came for Coach Strahm (now a member of the College Football Hall of Fame) to hang up the whistle we all knew the belief "We Don't Lose at Donnell" would be safe under the watchful eye of our team mate Doug Coate. To this day many of us don't understand why Doug was only given two seasons at the helm of the Oilers and their new NCAA Division II status. Coach Coate is a stand up guy that wore the orange and black both as a player and a coach and understood what it meant to be an Oiler. But the change was made.

So they brought in a coach with years of experience as an assistant and as a head coach. I am sure the Coach Dan Simrell is a great guy but I have never met him. I have not been to an Oiler game since Coach Coate was fired. Coach Simrell seems to be creating his history all over again as in Toledo when he coached an average team and was let go with an average record. Findlay is now 30-40 under the leadership of Coach Simrell compared to 183-64-5 under Coach Strahm. This is not what Oilers of the past would rank as acceptable. The common belief was that the University moved past Coach Coate to obtain a higher caliber coach with more big league experience. It does not seem to have worked out as they planned.

Coach Coate on the other hand moved onto another great program at the University of St Francis in Ft Wayne Indiana. The Cougars are 65- 18 in the last 7 years under Head Coach Donley and assistant Coach Coate. Coach Coate was also the baseball coach and St Francis and did I mention is the all time win leader as baseball coach at Findlay?

Well Coach Coate has moved on and no doubt will not return to Findlay but as they say in college football it's time for a change.

It's time to restore the Pride in Oiler Football! The men that played for Coach Strahm and the men that wear the orange and black today deserve better.

If the powers at the University are serious about the football program and want to bring a coach in with big league experience and an Ohio football background I understand Lou Holtz likea to take on challenges and is available.

Well that is my two cents about Oiler Football but I am sure it won't make much diffence as I doubt anyone from Findlay will see the Big Dawg Tales, but hey I sure feel better.

Until we meet again.

A great Letter to the Editor at Indy's Child!

**** As a side note I have removed last names from his letter for my post here on the blog***

Dear Editor,
My name is Darin. I have lived in Indianapolis for almost 2 years now and have enjoyed reading your publication. I appreciated the variety of activities that were presented along with the advertising that related to our family and my 2 young children. I also very much appreciated the article that sought to educate the public about children with Down Syndrome submitted by the Indiana Down Syndrome Foundation's executive director.
By this time I am confident that you have realized what a grave mistake it was to present the issue of prenatal testing in the unfortunate manner that you did. One of the children on that cover belongs to a man I consider to be one of my best friends. I also consider Nash to be my friend. I understand that you have received quite a number of letters by this time.
I would like to help you understand why that is and what it is you can do to turn this awful mistake into something positive.
7 years ago I was truly blessed with a son and his name is CJ. When CJ was born he had some medical complications. We were living in Goshen IN at the time about 3 hours north of Indy. They told us that our newborn would have to have surgery and needed to be sent to Riley in Indianapolis. This was my first born. My wife had to stay in the hospital and I had to follow my son in an ambulance for 3 hours to arrive at a hospital I had never been to before late at night. That was a difficult time. My son was put in NICU and I spent the night on a lazy-boy in a lounge and was woke up twice to sign papers. The next morning a young physician in residence came to me and said "Mr. Y----- I need you to sign some papers before we take your son into surgery". I read over the papers and first thing that was listed as a possible side effect was DEATH. I stood there and I thought...Then I went up to the man and said "if my son doesn't have this surgery is he going to die?" He said "yes". I said "then there really isn't much of a choice now is there?". I signed the paper and walked over to my son's bed...put my forefinger down by his little hand, and he grasped on to it. I had tears running down my face. Seeing this, the resident came over to me and said "Mr. Y----...there are some babies in this room that are going to die. Yours is not one of them. If he was I would tell you."
CJ came out of surgery just fine. While spending time in NICU they told us they had done some blood work to confirm it but he had indications of Down Syndrome.
He was moved over to a regular unit after a few days.
There was a head nurse there who looked over him. She would come up to his bed and say "CJ...you're beauuuuuuutiful...you tell your mommy and daddy, you say daddy, I'm beauuuuuuuuuuuutiful!" I can't tell you how much those words meant. Another woman from Riley named Anne from the Down Syndrome clinic told us something very important. She said "he is a baby first. He is not a Down Syndrome baby...he is a baby with Down Syndrome". She went on to tell us the sky was the limit for him. He could do what other kids do.
3 years went by and we had learned a lot about DS.
The phone rang on a Tuesday morning. It was an adoption agency. They said a little girl was going to be born with DS in about a month and wanted to know if we were interested in adopting her. We said that we were. The phone rang the following Thursday and the agency said "baby came early, mom picked you. When can you get here?" We brought our new bundle of joy home from the hospital the following Tuesday. Her name is Grace.
One time I had a colleague at work say to me "awh come on...you couldn't tell me that if you could have had CJ with out DS you wouldn't have chose it." I thought and then I said "you know, Down Syndrome is part of who CJ is...if he didn't have DS he wouldn't be CJ.
So I can honestly say that I wouldn't have him any other way."
These children have opened area's in my life I didn't even know existed. They have gifts and talents to share with the world. I have gone places, met people, and done things beyond myself because of CJ. We moved to the Indianapolis area so that CJ and Gracie would be able to experience a better education and social life without the prejudice and discrimination that they were experiencing up north. What a disappointment to have a family publication that I appreciated insult my friends and family in this manner.
The group of people affected by this stretches way beyond Indianapolis...and way beyond our Down Syndrome extended family. This was a direct case of bringing pain to the disability community. I myself have Diabetes. I wonder if we live in a time that if people knew their child was going to have diabetes that they would choose to terminate the pregnancy early enough that no one would know. That would be unfortunate because I have lived a tremendous life.
In spite of having a learning disability I am currently attending graduate school to earn a masters in special education which I intend to dedicate to my son and daughter.
So where can we go from here? I think an apology is in order for the Down Syndrome community and especially those children and their families who were on the cover this month. Support for our annual fundraiser to help raise money and awareness would be a good gesture. And to help balance the scales a bit it wouldn't hurt to have a regular issue dedicated to the children of Indianapolis who happen to have a disability. My friends and I have a wonderful group of men called Dads Appreciating Down Syndrome. I'd like to invite anyone from Indy's Child to come and join us at one of our meetings and or events. I have a great picture of CJ and I at the annual DADS fishing outing that I'm attaching to this e mail. It's my favorite picture. While I'm at it I'll also attach a pic of Gracie and I at the DADS family camp out last year.
I trust that you as a publication will do the right thing here and celebrate our children with us. Not as something to be thrown away or discarded. But as valuable friends and neighbors that have a considerable contribution to make.
In all Sincerity
Darin

US Supreme Court, IDEA and kids with Disabilities

INFORMATION BULLETIN

Take Action!
From the National Down Syndrome Society

July 7, 2006
U.S. SUPREME COURT DENIES REIMBURSEMENT OF EXPERT FEES
On June 26, 2006, the U.S. Supreme Court issued a 6-3 decision in Arlington Central School District Board of Education v. Pearl Murphy and Theodore Murphy. The question the Court decided in Arlington v. Murphy was whether the Individuals with Disabilities Education Act (IDEA) authorizes parents who win an action (“prevail”) under the due process provisions of IDEA to recover fees they paid to experts during the case. Many parents find it necessary to hire private experts to observe and evaluate their child and then testify in an action challenging a school or district’s decision regarding their child’s IEP.
Justice Alito wrote the majority opinion and was joined by Chief Justice Roberts and Justices Scalia, Kennedy and Thomas. The majority opinion states that IDEA does not authorize the reimbursement of expert fees. Justice Ginsberg agreed with this result but wrote a concurring opinion because she disagreed with some of the other statements in the majority opinion. Justice Breyer wrote the dissenting opinion and was joined by Justices Souter and Stevens. The dissenting Justices argue that IDEA does authorize the reimbursement of these fees. The full text of Arlington v. Murphy can be found at http://capwiz.com/ndss/utr/1/AKNBGCSJEE/CHALGCSJFO/790754201
IDEA states that “in any action or proceeding brought under this section, the court, in its discretion, may award reasonable attorneys’ fees as part of the costs to the parents of a child with a disability who is the prevailing party.” The majority opinion rejects the argument that “costs” includes the reimbursement of expert fees. This conclusion is reached in spite of the fact that the 1986 Conference Report for IDEA clearly states that Congress intended the term “attorneys’ fees as part of the costs” to include reasonable expenses and fees of expert witnesses and the reasonable costs of any test or evaluation which is found to be necessary for the preparation of the case. According to the majority opinion, the intent of Congress is not the key issue in this case. Instead, the focus is on whether the language in IDEA gives clear notice to the states that by accepting IDEA funds they might be liable to reimburse prevailing parents for expert fees. The majority of the Court concludes that “the terms of the IDEA fail to provide the clear notice that would be needed to attach such a condition to a State’s receipt of IDEA funds”.
The Justices offering the dissenting opinion disagree with the rest of the Court’s decision to ignore the intent of Congress. They also argue that IDEA’s basic purpose further supports interpreting the provision’s language to include expert fees. IDEA guarantees a “free” and “appropriate” public education for “all” children with disabilities and the expense of paying experts to secure an appropriate education undermines this guarantee. Parents have the right to become involved in their child’s education and IDEA encourages their participation. The dissenting Justices point out that parents are assured by IDEA that they may question a school district’s decisions about what is “appropriate” for their child and in doing so, they may secure the help of experts. The dissent concludes that “the practical significance of the Act’s participatory rights and procedural protections may be seriously diminished if parents are unable to obtain reimbursement for the costs of their experts” and that experts are necessary because “the vast majority of parents whose children require the benefits and protections provided in the IDEA lack knowledge about the educational resources available to their child and the sophistication to mount an effective case against a district-proposed IEP.”The preceding quote in the dissenting opinion for the Murphy case comes from Justice Ginsberg’s dissenting opinion for the Shaffer v. Weast case in 2005. In a prior information bulletin we explained that Shaffer v. Weast places the burden of proof on the party (usually a parent) who is challenging the appropriateness of an IEP, unless there is a state statute placing the burden of proof on the district. The fact that most parents must now prove the inappropriateness of the district-proposed IEP, increases the need for experts.The combined effect of these two Supreme Court cases is to discourage parents from filing a due process complaint because of the economic impact on their families. NDSS encourages parents to try to resolve disagreements at the school and district level using non-adversarial forms of dispute resolution. However, sometimes parents end up having to choose between filing a complaint or forfeiting their child’s educational rights under IDEA.As a result of the Shaffer and Murphy cases it is more important than ever for parents to be well informed about their child’s rights, to develop effective advocacy strategies and to access the free and low cost resources that are available in their communities. The NDSS website (http://capwiz.com/ndss/utr/1/AKNBGCSJEE/KVCOGCSJFP/790754201) and local NDSS affiliates are great sources of information and support. If you need help contacting an affiliate, call NDSS at 800-221-4602. In addition, every state has organizations that are funded to help parents, such as Parent Training and Information Centers (PTIs), Community Parent Resource Centers (CPRCs) and Protection and Advocacy agencies (P&A’s). A directory of PTIs and CPRCs can be found at http://capwiz.com/ndss/utr/1/AKNBGCSJEE/BZWOGCSJFQ/790754201 A directory of P&As can be found at http://capwiz.com/ndss/utr/1/AKNBGCSJEE/KBROGCSJFR/790754201
If you have questions or comments about this bulletin, contact Ricki Sabia at rsabia@ndss.org. If you or others you know would like to be added to the NDSS mailing list, send name(s) and email address to advocacy@ndss.org
National Down Syndrome Society666 Broadway, New York, NY 10012,Phone: 800-221-4602; Fax: 212-979-2873e-mail: advocacy@ndss.org; Web site: http://capwiz.com/ndss/utr/1/AKNBGCSJEE/LPDKGCSJFS/790754201
Our mission is to benefit people with Down syndrome and their families through national leadership in education, research and advocacy.

If you want to run with the big dawgs you have to get off the damn porch!

I have always been one of those guys that wanted to do the manly things, play football, ride a harley, be cool, be tough and have a bit of a hard ass image. And all of that was true up until February 16, 2001 when the most amazing thing happened, my son Nash arrived and changed my life for good.

If you have read my blog or know me personally you know that many aspects of the BigDawg have changed over the years. If you are reading this you probably know that Nash has Down syndrome or Trisomy 21 and is the coolest dude I know and my best buddy.

Recently we had the opportunity for Nash to be on the cover of Indy's Child a parenting magazine here in Central Indiana along with some of our friends children and one of the mom's in our wonderful groups known as The Indiana Down Syndrome Foundation (IDSF) and Dads Appreciating Down Syndrome (DADS). Our group had purchased this opportunity at a fundraiser for another group earlier this year. Our Executive Director and the Magazine worked out the details and we believed that the issue was to be about summer fun. Why else would they have our kids pose in the pool at a cool waterpark located in our nicest Holiday Inn here in Indy.

Well Friday was a crazy day as I was trying to get out of the shop early and head home. As some of you may know I left the for profit world for the not for profit world a few years ago and am the CEO for a company that works with individuals with different abilities. Well one thing led to another and I got stuck selling one of our older vans to a church among things and finally left for my most important tasks of the day. I had to take care of two pieces of business. First I had to pick up our section of tickets to the upcoming Wiggles Concert here in Indy. I can assure you in my Harley riding beer drinking days I never thought I would spend and evening with Jeff, Anthony, Greg and Murray but this will be round two with the blokes from down under as Nash loves these guys. My second priority was to stop by our local grocery and pick up as many copies of Indy's Child as I could get as they just hit the stand and our Nash was on the cover.

Well got the tickets and slid into Marsh Supermarkets and quickly grabbed a huge stack and booggied to the car. Once inside I admired my son on the cover with a big smile and then my heart sank to my stomach. Right above our kids was a caption that read "Undertanding the results is key for prenatel screening tests". Without going further I knew I did not want to go home as my wife Jan had been on pins and needles waiting on this to hit the stands and knew she would be devestated. When I read the article it got worse. I am not going to go into all of that but if you want to know more about the article and see the pictures ect see Jan's blog at Mauzy's Musings link here on my blog. I would insert a link here but damned if I know how.

Bottom line it was all about finding out if you child has Down syndrome or not with out providing the least bit of positive information or resources. I was in shock.

Well the old me would have taken my old truck and loaded it with all the copies I could find and driven it right thru the front doors of Indy's Child for them to find when they returned to work. And who knows what else.

But an amazing thing happened thanks to being Nash's daddy. I knew I was mad and hurt that basically this magazine had made my son a poster child of for testing and decesions without information, but I also know that if you get off the porch to run with the big dawgs sometimes you are gonna get bit.

Well we had just been chomped on......and I knew the only thing I could do was try to turn this whole thing around. I had to keep in my mind that this was just a really dumb mistake and no one at the magazine connected the dots on what they had done. That they were not trying to do this on purpose. So I started making phone calls. Talked to some of the best people in the disability and down syndrome movement that I know. Jan went to work telling the world and I am sure that Indy's Child's web site has never had the traffic or letters to the editor that they have right now.

The next step will be to have a constructive discussion with the staff at Indy's Child and figure out how to right this wrong and I know that it can be done. I know that we just might be able to turn this situation into one of the most positive PR campaigns we have ever seen here in Indiana. At least I know that is my goal. I mean hey, they are about to find out what it feels like to run with the BIGDAWGS.

I am so proud of my son and I hope that someday he realizes how much of a difference he has made in his daddy's life.

I will hopefully update this situation soon.

Until then I hope you all get off the porch and step out of your comfort zone this week and do something positive you have been putting off. You might get bit but you will be a better person for it.

The BigDawg....AKA Nash's Daddy.

Important Dates

Thought I would though out some very important dates for the summer to everyone. I hope you can attend some of these events so I can meet you.


May 31 - Indiana Down Syndrome Foundation Annual Meeting 6:30 p.m. Riley Hosptial for Children, Indianapolis, IN.

June 9, 2006 - 4th Annual DADS Golf Outing - Pebble Brook Golf Course Noblesville, Indiana

July 21-23 - NDSC National Convention - Atlanta Georgia

July 29 - 5th Annual Janus Ride and Poker Run

email me for details at jhuffman@janus-inc.org

Rainy Saturday Reflections

Well it is a very cool and rainy day here in Indiana and instead of being at our Saturday t-ball game we are all at home. This particular rainy day in Indiana is kind of a big deal as it's Pole day at the Indianapolis Motor Speedway for the Grand Daddyof them all the Indianapolis 500. There will probably be no engines running today. so we will hope for tomorrow.

Being home this morning has given me a rare chance to update my blog. It has been quite awhile since I have had that chance. It is hard to believe that it is almost a year since I assumed the CEO position at Janus. What a year it has been and we have made many accomplishments and continue down our path of massive change at break neck speed. I was reflecting as I looked in the mirror today and noticed that one year later I am a little thinner around the waistline, a little thinner on the top of my head and a lot more silver has invaded my haif. I hope that all means I am a little wiser this year.

Nash has also kept me very busy this year. During the winter we took up gymnastics every Saturday morning which he really enjoyed and was pretty darn good at also. It was great to see him learn and improve every single week and I was amazed at the things all of the kids in his class were able to accomplish. I will always remember the smile on his face the day he made it across the balance beam all by himself. It was great.....

Spring brought to us a new sport challenge. It's baseball season and Nash plays on the Carolina MudCats of the Noblesville Youth Baseball League. He is playing with a group of other 5 year olds and what a fun way to spend Tuesday nights for practice and Saturday mornings for games. They have all advanced on their hitting skills and now understand they need to let one person get the ball and not tackle each other trying to get the ball themselves.

Well time to run for now....off to help my future brother in law move some furniture.

Great Best Buddies Story

Hello Everyone

Below is a story from Best Buddies Indiana, it's a great story about a local teen whose father happens to be a member of our DADS group.


Here's some good news that makes a Dad proud. The article below has been submitted for publication in the Spring Newsletter of Best Buddies Indiana at the request of the Director, Sara Baldini. It is hoped that the attached photos will be published as well because they really tell the story better than the words. Feel free to share Brian's story with any "experts" who focus endlessly on your child's limitations. It is our hope that Brian will be able to project a very positive image of people with Down Syndrome to a large congregation every Sunday.

Ted



In January of this year, Brad Worrell, a 17 year-old Junior at Carmel High School and a member of the CHS Cross Country Team, became a Peer Buddy for Brian von Eiff, a 16 year-old Freshman at CHS who has Down Syndrome. Brian has also been active in sports at Clay Middle School, where he ran track and served as Student Manager of the 7th grade baseball team, and in the Carmel Dads' Club Special Sports Program and the Allisonville Challenger Baseball League. Both Brad and Brian are also active in their parish, Our Lady of Mount Carmel---Brad in an elected leadership position in the parish chapter of the Knights of the Holy Temple and in the high school youth program known as Antioch; Brian in delivering Thanksgiving and Christmas food and gifts to the needy and helping serve meals at The Little Sisters of the Poor.

Brad and Brian hit it off from the start and quickly became truly "Best Buddies." They eat lunch together every other day at school, attend the Antioch sessions together every Sunday evening after Mass, and Brad has served as mentor and "Guardian Angel" for Brian at two parish and diocesan weekend retreats. Brad has gone way beyond the minimum requirements for participation in the Best Buddies program and Brian has enthusiastically responded, doing better in school, making more friends and communicating more verbally. But the smile evident on their faces in the accompanying photo is all about the camaraderie of the Knights.

Since 1999, the Knights of the Holy Temple (known locally as Knights of Our Lady or KOOL), a fraternity of Catholic young men of high school age, has been active in a half dozen parishes mostly in the Diocese of Lafayette in Indiana. The group provides an opportunity for its members to contribute to the life of their parishes in a meaningful manner and affords young men the opportunity to become more deeply knowledgeable and involved in their Christian Faith, to develop Christian leadership and to provide an environment for prayer, Christian fellowship, vocational discernment and encouragement to live one's faith.

Perhaps the most visible activity of the Knights is serving at the altar for the two main Masses at OLMC every Sunday, 11:00 AM and 5:30 PM. It was at the 5:30 Mass every week that Brian watched Brad and decided he wanted to follow in Brad's footsteps. Brad had gotten to know Brian well through Best Buddies and was confident that Brian had what it takes to become a Knight. He consulted with the almost 30 brother Knights who unanimously agreed.

On March 25th, 2006, at a private Mass and ceremony at Our Lady of Mount Carmel, with his Best Buddy, Brad, as his sponsor, Brian was initiated into the Knights of the Holy Temple. Brian's smile says it all, and Brad, who was also celebrating his 17th birthday, had one to match. Brad will now begin Brian's training and soon Brian will be serving Mass alongside Brad and the other Knights every Sunday at 5:30. And judging from the comments and responses of the other Knights, Brian has been "adopted" by 30 additional Peer Buddies. Congratulations to Brad and Brian, two great Best Buddies! And a special thanks to the Knights of Our Lady!

Changes to Indiana First Steps Early Intervention Services

April 12, 2006

Dear First Steps Parent,

Changes are coming to Indiana’s First Steps system. I am writing to explain them, and to ask for your support and cooperation as we move forward together. I also hope to reassure you that, as a result of these changes, First Steps will be able to continue providing the highest quality early intervention services, now, and in the years to come.

Cost Share and Insurance Access Changes – Effective May 1, 2006
In 2005, the Indiana General Assembly passed a law requiring First Steps to change its family cost share program. These changes were reviewed, and approved, via the State’s rule-making process, and will be effective for services provided beginning May 1, 2006. Please refer to the enclosed chart for an idea of how your payment may be affected, and please note that if the cost share amount exceeds the actual cost of a service, you will pay the lesser of the two per visit, up to the total monthly maximum.

If (since your last annual review) you have experienced a reduction in income or an increase in out-of-pocket medical expenses not covered by your insurance, your cost share can be adjusted accordingly. Please contact your service coordinator as soon as possible, to ensure your health insurance, income, and medical expense information is up-to-date. Keep in mind that all resident family members are included when determining uncovered medical expenses.

To ease the impact of the cost share change, this year’s General Assembly passed a law requiring families to provide First Steps with information on all health insurance plans covering eligible children, as well as written consent to bill for services provided. This is helpful because if First Steps subsequently receives an insurance payment for a covered visit, your cost share for that visit will be reimbursed. However, you will still have to pay your full cost amount upon receiving services.

If you have not already provided both your insurance information and consent to bill, or if your insurance information has changed since your last IFSP, please contact your service coordinator immediately. Even if your insurance data has not been entered into the First Steps system by May 1, it will be applied retroactively to services beginning May 1. Please note that if you have reason to believe insurance billing would somehow present a hardship for your family or employer, you can request a waiver review by contacting your service coordinator

New Eligibility Criteria for First Steps – Effective May 1, 2006
In 2005, FSSA brought together a stakeholder group (comprised of parents, providers, and other concerned parties) to examine ways to ensure the continued viability of the First Steps system. A subcommittee was formed to review our eligibility criteria; due to its recommendations, our requirements have been tightened slightly.

Per current practice, your child’s eligibility for continued services will still be determined by a multi-disciplinary team of early intervention practitioners. At your child’s next annual IFSP, the early intervention team will re-evaluate your child’s eligibility. Under the new criteria, your child will still be eligible for continued early intervention services if he or she:

· Has been diagnosed with a physical or mental condition that is known to result in a high probability of developmental delay. These conditions include, but are not limited to, chromosomal abnormalities or genetic disorders, neurological disorders, congenital malformations, sensory impairments (including vision or hearing), severe toxic exposure (including prenatal exposure), neurological abnormalities in the newborn period, or birth weight of 1,500 grams (3.3 pounds) or less; or,

· Is shown to have a delay of 20% or more in two areas of development OR of 25% or more in one area of development (adjusted for prematurity).

One of our goals is to help your child reach an appropriate level of functioning ~ when this happens, it is cause for celebration! Per current practice, if at any point in the IFSP cycle your child’s ongoing providers indicate he has surpassed the eligibility criteria they will advise you and your IFSP team in order to facilitate your child’s graduation from First Steps.

New Service Coordination Structure – Effective on or before July 1, 2006
In order to improve supervision and support for those who perform the most important function in the First Steps system, our System Point of Entry (SPOE) offices are in the process of assuming direct responsibility for service coordination. The exact timing of the change may vary from SPOE to SPOE, but by no later than July 1, service coordinators (SCs) will be local SPOE employees.

Under this new system, most SCs will be either full- or half-time employees, and the total number of SCs required statewide will be reduced. Further, some current SCs have already indicated they will not be applying for these positions. As a result, it is possible your current SC may leave the system on or before July 1; you will be contacted by the SPOE as soon as they become aware of a departure.

Throughout this transition, you deserve to receive high quality services from your current SC; however, if you learn your SC has left the system before you are contacted by the SPOE, if you feel that your child’s needs are no longer being met by your current SC, or if you have concerns about this transition (or your child’s Spring/Summer transition from First Steps) please contact the SPOE immediately. While there will undoubtedly be glitches here and there, your local SPOE is anxious to work with you to make this a positive change for you and your family.

While I realize change can be unsettling, it can also lead to great good. It is my sincere belief this will be true of the changes coming to First Steps, and I greatly appreciate your patience while we continue to work to make First Steps a strong and sustainable force for good, long into the future.

Sincerely,


Lora Miller
First Steps
Division of Disability and Rehabilitative Services
FSSA - State of Indiana

The chart below provides a guide to how your First Steps cost share payment may be affected by legislative changes. To learn where your family’s income falls within the 2006 Federal income poverty guidelines, please go to:
http://www.in.gov/fssa/first_step/costparticipation/index.html.

To learn the exact percentage of Federal income poverty level First Steps currently has on file for your family (as well as the income, medical expense, and insurance data on which it was calculated) please contact your service coordinator or local SPOE office.

FIRST STEPS COST PARTICIPATION SCHEDULE OF COSTS

Please note that if the cost share amount exceeds the actual cost of a service, you will pay the lesser of the two per visit, up to the total monthly maximum.

Dads Appreciating Down Syndrome Golf

April 3, 2006


Dear Friend, Golfer, Sponsor and D.A.D.S. Supporter,

Thank you for your support and participation in the 3rd Annual Catlin Morgan D.A.D.S. Charity Golf Event. We are ready for our 4th event and hope we can count on your generosity again. In 2005, with the help of our donors, sponsors and 282 golfers, D.A.D.S. raised an amazing $66,500 to support Riley Hospital’s Camp Hi-Lite, the National Down Syndrome Society’s Policy Center and other programs and initiatives which promote inclusion, acceptance, education, social opportunities and advocacy for individuals with Down syndrome.

D.A.D.S. welcomes our new Title Sponsor and extends an invitation to you to be a part of the 4th Annual Connor Patrick Insurance Services D.A.D.S. Charity Golf Event, Friday, June 9th at Pebble Brook Golf Club in Noblesville, Indiana. Enclosed, you’ll find information for golf registration and sponsorship opportunities.
We are also seeking donated items to include in baskets to be raffled or auctioned during the event.

In 2002, 8 men gathered with one thing in common; a child with Down syndrome. We adopted a simple mission:

“To assist and support, through fellowship and action, the fathers and families of individuals with Down syndrome”

By staying true to this mission, to date we’ve raised over $150,000 and helped start-up chapters of D.A.D.S. all around the country. In the past 30 days we’ve assisted chapters developing in Phoenix, AZ and Kansas City, MO.

We hope we can count on you so we can continue to promote our mission

For more golf registration information, please contact Scott Harding at ScottHarding@Fepco-inc.com . For additional sponsorship information, or to provide a logo for signage, contact Tony Cirone at t.cirone@charteronebank.com . If you or your company wishes to donate an item for our raffle and auction, contact Joe Meares at joemeares@in-motion.net , or you can call these individuals at the following numbers:

Scott: 317 403 1004
Tony: 317 409 6322
Joe: 317 523 5888

Thank you and we hope to hear form you, better still; see you in June.


Sincerely,

D.A.D.S. ’06 Golf Committee