Just a reminder that the Omaha Support Group meeting has been reschedule to Monday, September 13th due to the Labor Day Holiday!
We hope to see everyone at Pump It Up on Monday, September 13th at 6pm!
Caritas Place Village will be a residential/vocational facility that will respect the abilities of all people with developmental disabilities by assisting them in developing a work ethic while learning independent living skills in a rural setting. Caritas Place, Inc. is a 501(c)3 non-profit agency established in 2007 with the vision to provide a village community, Caritas Place Village, in the Lincoln area. It will include residential living (both group homes and independent living), education, recreation, and employment opportunities for adults with developmental disabilities.
You can learn more about their mission at www.caritasplacevillage.com/
Right now they have a call out to the autism community for support. There is a risk that the Caritas Dream may never happen because DHHS won’t give them a group home license. Please consider copying the form letter below or write your own and send it today to Michelle Kosmicki at mkosmicki1@gmail.com or you can mail a letter to Michelle at 8030 Creek View Ct, Lincoln, NE, 68516. Please have your letter or email to Michelle by September 1.
Memo To: Nebraska Families of Children with Autism
From: Gail Durkin, Executive Director, Autism Action Partnership
Date: July 21, 2010
Subject: The Autism Treatment Program Act (Legislative Bill 27)
It is with great regret that the board of directors of the Autism Action Partnership must inform you that our board has decided to withdraw our financial commitment to the Nebraska Department of Health and Human Services (DHHS) regarding the Autism Treatment Program Act. While we have worked for many years to create a financial support program desperately needed by Nebraska families to provide therapy for autistic children, it is clear many families will not receive that support under the guidelines adopted by DHHS.
As you know the Autism Treatment Program Act was established to provide early intense behavioral treatment services to young children with autism. The intent was to create a pool of funds involving tobacco settlement money, Medicaid dollars and private donations. This pool, totaling $3.75 million a year, would cover 80 – 85 children on an annual basis spending about $44,000 per year in treatment services. Those are the numbers that were discussed by DHHS and the reason private donors were willing to donate $2.5 million over the next five years to support this act.
At a recent meeting DHHS officials indicated they would use the pool of funds in a different formula than what was originally intended. Funds would be used in the following fashion:
1st for DHHS Administrative Expenses
2nd to the Department for “other medical costs” for children who would not otherwise qualify for Medicaid except for the waiver;
3rd – the balance to fund services pursuant to the waiver.
We were also informed in this meeting that only 40 children would be selected for the program, and DHHS would not guarantee that funds would be available for treatment services throughout the year. These stated priorities are clearly a direct conflict with the intent of the statute as well as the desired goals of our donors and board, leaving our board no choice but to end discussions and involvement with this state agency. We know you are as deeply disappointed in this decision as we are, but hope you understand the difficult position we were placed in when we suddenly learned the reality of how the funds would be allocated.
Autism Action Partnership has tirelessly worked to turn the 2007 legislation into reality. We have never abandoned our mission to help autistic children and their families, and our donors have never wavered on their generous private donation of $2.5 million. As families continue to struggle to pay for these needed services, we have all prayed and demanded that this waiver would finally become a reality. However, our organization is now forced to face reality and no longer has confidence in the state’s commitment to help kids with autism therapies.
Our board has no intention of giving up in our effort to help our Nebraska families with autistic children. We will continue to work with our donors in an effort to help ease the tremendous financial burdens many of you face and we will continue our efforts to improve services to people with autism and their families. We want to thank all of the effort of parents and families that have spoken out over the last four years in support of this effort, even though this waiver may not have directly impacted their child, we know many of you never gave up and stood firm with us.
If you have additional questions or comments, please feel free to call me at 402-496-7200 or email me at gdurkin@autismaction.org .
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Another point of contact is the Executive Director at Health and Human Services.
Kerry Winterer
Executive Director
NE Dept of Health and Human Service
301 Centennial Mall South
Lincoln, NE 68509-5026
You can download a copy of the Autism Action Partnership’s Memo HERE.
If you’ve been around autism long you will likely have met Lincoln’s Sharon da Vanport. Sharon has been a fierce advocate for the autism community and is the Executive Director of the Autism Women’s Network (AWN). Sharon is diagnosed with Asperger Syndrome as well as parenting a child on the autism spectrum. You can learn more at www.autismwomensnetwork.org.
Sharon recently received an invitation to the White House to celebrate the 20th anniversary commemorating the signing of the Americans with Disabilities Act! AWN realizes this rare opportunity to represent autistic females on a national level, therefore they are raising funds to off set the cost of this trip. They have almost reached their goal but if anyone is interested in making a donation to assist them with these costs they can do so by visiting their web site at www.autismwomensnetwork.org . This is a great opportunity for them to raise autism awareness at this special White House event that will be held on July 26th!
Congratulations Sharon and AWN!
The Douglas County Sheriff’s Department needs feedback on the implementation of Project Lifesaver.
The primary mission of Project Lifesaver is to provide timely response to save lives and reduce potential injury for adults and children who wander due to autism, Down syndrome and other related conditions or disorders.
If you live in Douglas County, please answer this 2-question survey.
http://www.surveymonkey.com/s/W8S2MPQ
Thank you for your input!
Please click here to get added to our mailing list so that you’ll be notified whenever a Newgram is published!
To read our current newsletter or view previous editions please visit www.autismnebraska.org/newsgram.
It was recently brought to our attention that the DHHS will reimburse families for the cost of their primary health insurance if one of their children are disabled and have Medicaid as a secondary. The contact person is Cherie Swanson and her number is (402)471-8418. She is with DHHS and can explain HIPP (Health Insurance Premium Payment). This is only for families that already have approval for Medicaid as a secondary insurance. Call today and see if you qualify.
We have a family looking to pull together some of the autism community to participate in the John C. Fremont Days Parade. If you are interested in participating please contact Jill at meuschnebraska3@aol.com . The parade is July 11th in Fremont Nebraska.
The Autism Society of America was disappointed to report that their “Set up a 24/7 support line for families and people with autism” idea did not get Pepsi Refresh project funding in May (the grant was only awarded to the two ideas that got the highest number of votes).
However, since their idea was in the top 100 in number of votes cast, we now have a second month to try and get to the top!
PLEASE CONTINUE TO VOTE EVERY DAY IN JUNE AT www.refresheverything.com/autismsource.
When a diagnosis is made, parents and family members often wonder what to do next. Even where valuable treatments and support services exist, families must negotiate a maze of agencies and providers in search of support appropriate to their individual needs—a process that consumes time and energy already in short supply for families affected by autism. Parents, individuals on the spectrum and professionals often want to talk to a skilled professional about their situation, and many times cannot or do not know who to call. The Autism Society already provides this line of support to many families and individuals, but with the help of this grant, we can expand our contact center to make trained professionals available at any hour of the day or night, and provide more training and support to Autism Society chapters to improve their local outreach efforts.
We sincerely thank all of you who have been voting for us, the comments from many of you have certainly reaffirmed our conviction to find funding that will allow us to set up this kind of round the clock support.
Please help us make this project a reality by visiting www.refresheverything.com/autismsource to cast your vote every day!
**On behalf of the Nebraska chapter we would like to urge you to vote as well as ask your family and friends to vote EVERYDAY! Our local chapter is primarily volunteer driven and one of the most challenging tasks for us is providing this support in a timely manner. We strive to provide this support to our new families as well as our veteran families but the idea of having a professional available to answer and support these families 24 hours a day is absolutely amazing! PLEASE lend your support to us help make this happen!
Be sure and visit the Omaha Support Group page to keep up on all of their upcoming events!
Click here to read the May 25, 2010 edition of the Autism Society of Nebraska Newsgram!
Please click here to get added to our mailing list!
To read our current newsletter or view previous editions please visit www.autismnebraska.org/newsgram.
We hear a lot of questions about what we do with the money raised from the Puzzle Walk. The most exciting answer is that 100% of the proceeds from the Autism Society Puzzle Walk stay in Nebraska. Essentially that money goes where our Board of Directors decides it best serves our mission of improving the lives of all (Nebraskans) affected by autism!
So who are the Board of Directors? Our board is open to professionals, family members and persons on the spectrum. We seek representation from communities across the entire state of Nebraska. And this is your lucky day because right now we are seeking applications to fill open board positions!
We all know that there is so much to do in serving the autism community. Trying to meet these needs has been compared to trying to extinguish a three alarm fire with a bucket full of water. In other words, there is never enough time, money or resources to meet all of the needs. This is why our board is so very important. These community leaders help determine where the Autism Society is going to invest their limited resources.
Some previous areas where the Autism Society has invested their resources include the creation and maintanance of our web site and relevant Newsgrams, ASD State Conference, family scholarships, support groups, community events, sponsorship of summer ASD camps as well as scholarships for parents to attend conferences.
The Autism Society of Nebraska is committed to working with the local grassroots communities to meet their needs because no one knows better than you what your community needs. We are here to partner with you to make it happen! Our goal for 2010 is to expand our network of support groups across Nebraska. With a stronger grassroots organization it will be easier for us to make sure we are having a real impact across the entire state! Therefore…the Autism Society needs passionate individuals who are willing to step up and help lead the Nebraska grassroots community!
Please consider volunteering for this important leadership role in the Nebraska community.
Take the first step and download our application here!
(Please submit your application no later than July 1, 2010)
The Autism Society is having to change our toll free phone number. Please be sure and update your records to show our NEW phone number!
Every month, Pepsi awards grants through the Refresh Project for ideas that will have a positive impact– and you get to vote for the great ideas that mean the most to you.
In May, the Autism Society is eligible for a grant to expand our free nationwide support line (currently open 8 hours each weekday), to offer confidential, one-to-one contact with a live specialist 24 hours a day, 7 days a week.
When a diagnosis is made, parents and family members often wonder what to do next. Even where valuable treatments and support services exist, families must negotiate a maze of agencies and providers in search of support appropriate to their individual needs—a process that consumes time and energy already in short supply for families affected by autism. Parents, individuals on the spectrum, and professionals often want to talk to a skilled professional about their situation, and many times cannot or do not know who to call.
The Autism Society already provides this line of support to many families and individuals, but with the help of this grant, we can expand our contact center to make trained professionals available at any hour of the day or night, and provide more training and support to Autism Society chapters to improve their local outreach efforts.
The grant is given to ideas that get the highest number of votes for each funding level in a one month period, so we need you to log on and vote every single day in the month of May. You can vote for 10 different ideas every day, so please use one of those votes to support our project. Your vote will have a huge impact on helping people get support from those who really understand. Go to www.refresheverything.com/autismsource today to show your support of this great idea!
PLEASE HELP US SPREAD THE WORD!
Ask others to vote at www.refresheverything.com/autismsource throughout May
PLEASE VOTE EVERY DAY!
We will be launching a “Dear Abby” style column in our Newsgram that will be answered by a local autism professional. If you have a question or need advice please email to AutismSocietyNewsgram@autismnebraska.org.
The United Way of the Midlands honored more than two dozen volunteers at their 55th annual volunteer recognition luncheon. One exceptional volunteer is near and dear to our hearts here at the Autism Society.
Charles “CJ” Vickers, Volunteen of the Year. Vickers, a student at Millard North, was a participant in United Way’s Summer Youth Volunteer Program, on a team that taught fire safety to elementary school students. CJ is a committed leader in the Heartland Chapter’s Youth Council, teaching safety and preparedness classes, staffing display tables and participating in disaster response training. CJ has been diagnosed with Asperger’s Syndrome, a condition that often has an adverse effect on social skills, United Way and Red Cross staffers say he seems right-at-home addressing individuals and groups alike, thanks to his passion for helping people stay healthy and prepared.
Not only does CJ Vickers volunteer with the Red Cross but he also serves with the Autism Society of Nebraska Board as a Student Advisory Representative. He has been amazing with his volunteering and is always willing to lend his voice to the autism cause. Congratulations CJ we are all very proud of you!
The Dan Archwamety scholarship was set up to give hope, affirmation, and some financial help to young people diagnosed with an Autism Spectrum Disorder who plan to continue their schooling after high school.
Dan was an above average student who really had to study hard for the good grades he earned. He worked equally hard to learn how to socialize with other students, both his classmates and those who lived at his dorm. When his mother suggested that he could share his talents by offering to help other students in the UNK computer lab, he set out to do just that.
This scholarship was set up by his family, through the Autism Society of Nebraska, in memory of Dan, who died on June 1, 1997, as a result of a bike-truck accident, shortly after he completed his sophomore year at University of Nebraska, Kearney. The day after he died, two letters arrived from UNK, awarding him two different scholarships for his junior year. At his funeral service, a fellow student confided that she had no idea that he had a disability. She thought he was so much more mature than other college boys because he would offer to help her and other students in the computer lab at UNK.
Dan did not live to receive his scholarships, but he would be very happy to know that the memorials people gave to honor his life are helping other deserving young people with ASD to achieve their dreams.
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Ashton has registered to attend Nebraska Wesleyan University in the fall. He plans to study forestry and criminal justice so that he can become a Law Enforcement Park Ranger with the National Park Service.
Enjoy this excerpt from Ashton’s application:
Another obstacle that I’ve learned to deal with is “self advocacy”. I’ve learned to advocate for myself even when I would rather not say anything. Not saying anything is easier and more comfortable for me because that way I don’t have to talk to people. With AS, social interaction isn’t easy. In fact, at times, it is one of the most frightening “things” a person with AS has to do. Talking to people for me is like being lost. How do you start? What do you say? But I’ve learned to advocate for myself to the point that I’ll graduate from high school. I’ve been accepted to several 4 year colleges. What I’ve learned is people don’t understand that a student with AS isn’t like them. It isn’t a “choice” to be this way. We don’t make friends easy and we don’t think like the majority of students in school do. No we can’t “just act like the rest of them”. My brain doesn’t have “wiggle room” to do that. My brain understands black and white. My brain is yes and no, not maybe and I’ll do it later.
I guess that’s the ”thing” about aspergers, its invisible. Atleast with a physical disability, people can see that you’re different. With Aspergers, no one can tell that you have it. That you are different. Because of its invisibility, people think that you are rude and at times weird, which isn’t the case. At school I have been labeled as disabled, but in everyday life, I’m not given that same understanding because no one can see my disability. I don’t understand why.
But what I’ve learned is I’m OK and its OK to let other people know that I “don’t get it”. I’ve learned what self worth is and that I have value.
Please join the Autism Society in congratulating Ashton and wishing him well in his college adventures and beyond! Thank you Ashton for being a role model for all of us–both on and off the spectrum!
The Autism Society would like to thank EVERYONE for your support! We had amazing weather and a fantastic turnout to support the Nebraska Autism Community!
We had well over 700 walkers and raised nearly $40,000 to help us carry out our mission to serve the Nebraska Autism Community!
BE SURE AND VISIT OUR PHOTO GALLERY ON THE AUTISM SOCIETY WEB SITE FOR PHOTOS FROM THE WALK!
