The Rose Theater needs your input in order to help them craft their ASD classes to best meet your needs! Please take a few moments to download their survey form and share your thoughts!

Download their survey HERE.  Please email it back to michaelh@rosetheater.org.

Are you not sure what “acting” classes are like for children with ASD?  Check out the video the Rose made to help promote their program for teens!  Please keep in mind that the program looks a bit different for the younger kids and is built around getting them up and moving, following directions, and having fun.

Are you able to come to the hearing on Tuesday to show your support for Autism insurance reform in Nebraska?  It is CRITICAL that we fill the room!   Please help us know how many of you are going to be able to come!!  Please email Chrissy at cmcnair@neb.rr.com to help us prepare!

You don’t have to speak!  Just be being there you will help us be heard!

(For more information visit www.nebraskainsurancereform.org

We have a new update from the Nebraska Insurance Reform Steering Committee…

The hearing date for LB 1129 has been set. It is Tuesday, February 7th at 1:30pm. The hearing will be at the State Capitol in Lincoln, NE and will be in Room 1507. PLEASE PLAN TO ATTEND! It is so important that the autism community show up in support. Here’s what you need to know:

Let’s show our State Senators that we are UNITED, and we are ready for discrimination for our loved ones to END!!! THIS IS A GREAT OPPORTUNITY for us to be heard!!

LB 901:  A BILL FOR AN ACT relating to appropriations; to designate funds to be used for services for persons with developmental disabilities.

Currently there are 1,766 Nebraskans on the wait list for services.  This bill proposes to fund the services for those persons with developmental disabilities who are on the waiting list and past their date of need for services as of November 14, 2011.

A hearing has been scheduled on Monday, January 30th at 1:30pm in room 1524 at the Capitol.

We are being told that it is anticipated/expected that they will push to not fund wait list for people over 21 with disabilities needing services.

Several disability groups are coming together working to rally as many people as possible to attend the hearing.  If you’d like to speak that is fine but mostly they just need people to help fill the room.  Please contact Amy Svoboda at 402-742-4521 for more information!

We received this request from our friends at the Epilepsy community regarding the Nebraska Truancy Law.

We are meeting with Senators on Monday Jan 30th in preparation for the Feb 3rd Committee Meeting. Please, if you have a personal story you can send with us, we need to show the Committee members that this is indeed an issue.

They honestly do not believe it is, so let’s show them how many people it affects.  Even if you didn’t go to court and only received 5 day, 10 day, 12 day or 20 day letters, summarize your story and include the following; did you work closely with your school and they were aware of your child’s condition or special needs, did you go to truancy diversion, did you get shot down by a judge, attorney, school professional, did you miss work to attend meetings about Truancy, what is your school district, what is your city and state, how old is your child and what is their condition.

The Senator has asked us to “prove it”.  We plan to be there Monday morning in his office to do just that.  But we need your stories in order to do this. We will be checking email all weekend, feel free to attach letters you received from the state, even if you just re-print an email or letter that you already sent, that is good enough. Also email your stories to Stephanie Morgan at nebraskafamilyforum.com who will post the story to the blog they are keeping. This Blog is being followed by key school officials, state officials and county officials so the more we can post the better.

Thank you to those who have already posted your story. Now, take it a step further and place your story on your facebook, on your personal blog, on just a blanket email to close friends and family. Ask them to email their senators, just because it doesn’t effect them directly doesn’t mean it isn’t important to let their senators know that it is a broken law and can be fixed.

We know it is short notice, however it is important. Even if the law has not negatively impacted you today that doesn’t mean it won’t tomorrow.

Stacey Doty
Lifestyle Innovations For Epilepsy, Inc. aka LIFE
www.epilepsylife.org
sdoty77@hotmail.com

Stephanie Morgan
www.nebraskafamilyforum.com
nebraskafamilyforum@gmail.com

“Whenever the people are well informed, they can be trusted with their own government.”

–Thomas Jefferson

Thank you to our friends at the ARC for forwarding a list of legislative bills that they felt would be of interest to families of children, adolescents, and adults with disabilities.   The bold text is the bill, who introduced it, and an official description of the bill.  The italicized words are the thoughts and concerns presented by the ARC representative and shared with us.  We would like to encourage our community to use this list as a reference for which bills to investigate and we’d also ask you to please form your own opinions.

LB 821 – Health and Human Services Committee – To create the Nebraska Children’s Commission and require legislation to create the Department of Children’s Services.

This bill attempts to address the Foster Care Crisis. It could add some structure and organization where it is really needed as well as provide oversight to service deliver in places it is significantly lacking in.  It would also focus all Kids programs and issues in one place: the Department of Children’s Services which could be a good thing.

LB 825 – Dubas – Establish local offices for access to public benefit programs. This bill was written to address the issues Individuals are having when they attempt to use Access Nebraska (an online process where people sign up for public benefits)  This would establish local offices where individuals can now go to register for public benefit programs if they cannot get Access NE. online  to work.  This would be a good thing.

LB 826 – Dubas – Change provisions relating to legislative consideration of proposed rules and regulations under the Medical Assistance Act. My interpretation of this bill is that it attempts to address the proposed Medicaid cuts by saying that Health and Human Services Medicaid program cannot just propose and make cuts without legislative approval first.  It is a step in the right direction but this bill in its entirety may not change the more immediate situation of the cuts– it seems to be looking more towards stopping cuts in the future without legislative approval.  I would support this bill but give more  of my support to LB 952 (see below )which does a better job of addressing the Medicaid cuts right NOW.

LB 900 – Lathrop – Requires a report concerning individuals in need of multiple division services from the Department of Health and Human Services. When an individual is receiving more than one service for example Medicaid, Developmental Disabilities services AND behavioral health services  all the different entities involved with this individual would need to  report on why the individual  is eligibile to receive their services. What is happening is that one department is passing the individual off to another department saying they are better served there… and individuals are not being served appropriately when this happens especially if they need a variety of services.

LB 901 – Lathrop – Designate funds to be used for services for persons with developmental disabilities. This bill is to fund the Wait List in Nebraska.  Important bill that should be supported.—Call your senators.

LB 952 – Nordquist – Change appropriation provisions relating to the medical assistance. This bill is very important!!!! It addresses the proposed cuts to Medicaid. It speaks to eliminating each proposed cut and it includes an E-Clause (Emergency Clause) which means that when this bill is passed it becomes effective immediately.—Call  your Senators with support for this bill.

LB 1113 – Flood – Adopt the Nebraska Uniform Power of Attorney Act. This bill speaks to one of the options you have concerning substituted judgment. It is a Bill to monitor and get more information on before deciding what position to take– although it looks like it might be a good bill.

LB 1129 – Coash – Provide requirements for insurance coverage of Autism Spectrum Disorders. This bill is a bill to support on behalf of individuals with Autism.

LB 1144 – Ashford – Provide for Career Academy Schools. Seems like this bill is about establishing Career oriented schools for students (7^th through 12^th grades) that know they are not going to attend  college and want to have hands on experience with non-college related careers.  Could this be something students with disabilities who are not going to college might be interested in??—We might want to get more information and monitor this bill.

Have you been wondering what was going on with the process for insurance reform here in Nebraska?  Be sure and check out the new web site so you can stay informed of the latest updates!

http://nebraskainsurancereform.org/

An Update from the Nebraska Insurance Reform Steering Committee…

Hi Everyone.  As you may have heard, today Senator Colby Coash introduce a bill requiring insurance companies cover individuals with Autism up to age 21.  Most of you are involved in organizations that will have special interest in this, so please copy and paste the following and send out to your list servs or contacts.  Thanks to you all for the support over the last couple of (grueling) weeks!

Nebraska’s LB 1129–Insurance Coverage for Individuals with Autism!!

Today, Senator Colby Coash introduced LB 1129 that requires insurance companies to cover individuals with Autism Spectrum Disorders up to age 21.  The bill covers screening, diagnosis/evaluation and treatments, including evidence based behavior therapies such as ABA.  This has been a long time coming in Nebraska, and we are so grateful to Senator Coash for standing up for Nebraska’s families who are affected by autism! (To read a copy of the bill, go to www.nebraska.gov and search for LB 1129).

Currently, the bill reads that children up to age 9 will be covered up to $70,000 per year, and those from age 10-21 have a financial cap of $20,000.  However, Senator Coash has already agreed to introduce an amendment that would cover individuals for the first three years of treatment, up to $70,000 per year, regardless of age (up to age 21). After the first three years of treatment, each individual will be covered for up to $20,000 per year. The financial cap ONLY applies to treatment, and not to diagnosis or screening.

As you probably know, introducing the bill is just the beginning. We have a lot of work to do!!  Many have asked how you can help.  The Banking and Insurance Committee will be holding a hearing to discuss the bill, and your efforts are needed!  We don’t have a date yet, but as soon as we do, we will pass it along, and ask for you to send an email to your Senator, and if possible, attend the hearing.  We want to have lots of people in the audience representing our families, and showing our State Senators that we are unified!

PLEASE Like our Facebook page, Autism Insurance Reform in Nebraska, and continue to check email and our website for more updates.  Our website will go live soon, hopefully on Friday, and there you can get additional information.  (www.nebraskainsurancereform.org) .  If you have questions, please feel free to contact me at chrissy@neinsurance.com.

Thanks to everyone for all your support and hard work!  Those letters you wrote a month ago were great, and your voices were heard!!

Best Regards,

Chrissy McNair

An update from Chrissy McNair and the Autism Insurance Reform Steering committee…

First, a BIG thank you to all parents and professionals who attended the hearing last week, and to all who wrote letters!  Although we didn’t quite get the turn out we were hoping for, the hearing was a HUGE success! According to the representative who was there from Autism Speaks, our hearing was the  best he’s seen yet! The Senators were very engaged, asked great questions, and I think the ground work has been laid for a bill to be introduced in January.

So, here are our next steps:  We are working hard to determine what Senator would be best to sponsor our bill, and on getting feedback from the Banking and Insurance Committee on how they feel we should proceed.  We are working with Autism Speaks to get national data to help build our case.  The Nebraska legislative session begins in January, and shortly after the session begins, we will be given another hearing date to present our case, once again, to the Committee. This time, the discussion will center around the bill we propose.  WE WILL NEED YOU!!

As soon as we know the date, we will send out information letting you where and when the hearing will be. PLEASE ATTEND IF YOU CAN!

Thanks again for all your efforts!

If you have questions, please contact me at cmcnair@neb.rr.com or Kristin Flott at tkflott@cox.net.

You can also check out our Facebook page  ”Autism Insurance Reform in Nebraska”  for updates and Information… Be sure to LIKE it!

We Need You!  On Wednesday, November 30th at 1:30pm the Banking and Insurance Committee of the Nebraska State Legislature will be hearing testimony about Nebraska’s insurance coverage for people with autism.  We want to send the message to our State Senators that we are united and it is time that insurance companies stop discriminating against people with autism and provide coverage for necessary therapies.

PLEASE PLAN TO ATTEND!  We want to pack the room with parents, family members, neighbors.  Here’s what you can do:

1. PLEASE PLAN TO ATTEND!  The hearing will be in the State Capitol Building at 1:30pm on Wednesday, November 30th.  Most likely, the hearing will last only an hour or so.

2.  WEAR RED!  This is a way for the Senators to easily see who supports insurance coverage.

3.  WRITE A LETTER!  Please write up a short email addressed to the “Banking and Insurance Committee Members.”  Tell them in your email why you believe insurance companies should cover people with autism.  Tell them the impact not having coverage has had on your family. (send to cmcnair@neb.rr.com no later than Monday, November 28th) .

4.  ASK YOUR FAMILY/FRIENDS TO WRITE EMAILS TOO!  Have them send a short email as well on your behalf.  The more letters we get, the better! (send to cmcnair@neb.rr.com)

5.  SEND YOUR EMAIL/LETTER to cmcnair@neb.rr.com We will print off all these letters, bring them to the hearing, and submit them during testimony.  YOUR VOICE WILL BE HEARD!!!

If you cannot attend, please send the emails anyway by Monday, November 28th. If you have any questions, please contact Chrissy McNair at cmcnair@neb.rr.com or Kristin Flott at kristin.maylebenflott@unmc.edu.  Your voice is important!  This is not going to be easy, and it will take the entire community, united together, to be heard.

Participants needed for a Research Study - An examination of the Relationship between Sensory Processing and Emotional Regulation in Children with Autism

Seeking:     Parents with a child between ages 5 - 10

a.  Either typically developing (no disabilities)

b.  with Autism / Autism Spectrum Disorder

c.  be able to complete one time surveys regarding child’s behavior

Estimated time:  40 - 45 minutes

Please download a flyer HERE.

Come and learn how to tell your own/your child’s story to other caregivers and local elected officials.  Have your voices heard!

The Mosaic MEE! (Nebraska Advocacy Project) is an opportunity for individuals, parents, and guardians of children with intellectual and developmental disabilities to build relationships with elected officials. You’ll receive resources to assist you along the way.

Tuesday, October 4th @ 2:00pm

Presented by: Sheila Page

Legislative Aide to State Senator Colby Coash

Download a flyer HERE.

**Future Webinars**

Building Collaborations and Working Together Through Difficulties
Tuesday, November 1st @ 2:00pm
By: Bridget Cannon-Hale, MSW; Consultant

Building Relationships with Your State Senators
Wednesday, December 6th @ 2:00pm
Presented by: Denny Byars
Former State Senator for NE Legislature

Walk Now for Autism

—-—-

Autism Puzzle Walk

Why are there two autism walks? 

What is the difference?

Autism Speaks WALK NOW FOR AUTISM — October 9, 2011

   This walk supports Nebraska families by…

· funding global research into the causes, prevention, treatments and cure for autism

· raising public awareness about autism

· supporting insurance legislation efforts in various states. In 2011 they began working with Autism Action Partnership on this initiative here in Nebraska.

· Providing community grants that are awarded to service providers throughout the United States.

100% of the walk proceeds are used by the Autism Speaks national organization in carrying out their global mission.

Autism Society of Nebraska AUTISM PUZZLE WALK — April 28, 2012

   This walk supports Nebraska families by…

· facilitating a support network across Nebraska.  The Autism Society funds support groups across the state and has helped created family events such as pool parties, pumpkin patch outings, holiday gatherings, movie nights and family events at local attractions.  Local groups have joined forces with other organizations to create Fire Safety Days, Day Camps, Husker Heroes, Sleeping with the Sharks as well as helping sponsoring the Lose the Training Wheels camp.

· keeping the Nebraska Autism Community networked through our web site, electronic Newsgram, Yahoo list serve and Facebook page.

· creating conferences and workshops to bring training to our local community in conjunction with other Nebraska advocacy and educational groups.

· providing family and individual scholarships for Nebraska citizens.

· NEW in 2012!  Providing community grants to teachers and service providers who serve the local Nebraska autism community.

100% of the walk proceeds are used by the Nebraska chapter of the Autism Society in carrying out their local mission.

The Combating Autism Reauthorization Act allows for significant federal appropriations meant to assist all individuals affected by autism. The law focuses on expanding research and coordination at the National Institutes of Health, increasing awareness and surveillance at the Centers for Disease Control & Prevention and expanding the interdisciplinary training of health professionals to identify and support children with ASD and their families. On September 30, there will be an immediate hard stop of this federal funding. That means some existing federal efforts through the previously noted agencies will be forced to cease their efforts.

To preserve the progress that has been made, the Autism Society believes the Combating Autism Reauthorization Act of 2011 (S. 1094/HR 2005) must be enacted urgently.

Visit the Autism Society of America link below where they have an electronic tool to help you customize an email to your local respresentatives.  It truly only takes a couple of minutes to be heard! 

As of today, neither of our senators have signed on!  Tell them that you need their support!

Click here to tell your Nebraska Reps that you are out here and you need their support!

The IDEA National Survey Project is sponsored by the National Center for Learning Disabilities, National Down Syndrome Society, Autism Society of America, Autism National Committee, and The Advocacy Institute. The purpose is to study whether parents perceive the playing field as level for children with disabilities and their parents, and whether they believe their rights are protected. The survey will examine what parents and those who work with parents think about these issues. The deadline for completing the survey is July 12, 2011.

The survey will examine whether parents perceive themselves as being treated as equal partners in their children’s education, and what self-advocates and those who work with parent think. We ask questions about whether the rights of students with disabilities and their parents protected throughout the special education process, including IEP meetings, decisions about special education, evaluations and eligibility, and Due Process and Impartial Hearings. We also ask about inclusion and whether children with disabilities receive the education they need, or whether they are deprived of important services. We will be using your answers to compile a report about the experiences and perceptions of parents and those who work with them regarding these issues. See the survey Privacy Policy for more information.

All disabilities are welcome! The survey is not limited to the disabilities on which the sponsoring organizations focus. We are studying these issues as they affect all children with disabilities and special needs. We also have surveys for all members of the community.

Click here to take the survey!

Checkout the AWESOME float the North Platte Autism Society group put together for this weekend’s Nebraskaland Day’s Parade!  GREAT JOB!

Don’t forget to help us celebrate World Autism Day!  You can still sign up and join us at the State Capitol as it lights the top of the building blue in honor of World Autism Day. 

Friday, April 1st 7pm in Lincoln

Members from the Autism Family Network and the Autism Society of Nebraska will also be meeting outside on the west side (S 14th Street) of the Capitol at 7pm to show our support with glow sticks as our State Capitol lights up blue. 

To register for this event go to www.lightitupblue.org.  On the right hand side under “participate” you will see some featured events such as the Empire State Building.  Click o View All at the bottom which will take you to a new page and then click on Nebraska State Capitol and sign up!  we would love to make a chain of support around the Capitol and raise autism awareness!   We are hoping our blue will shine across the state!

April 2nd is World Autism Day.

Join us as we celebrate World Autism Awareness Day on the evening of April 1st as the Nebraska State Capitol will light up blue.  Autism Speaks together with the Autism Family Network and the Autism Society of Nebraska will turn Nebraska’s red & white to blue on the west side of the state capitol by the Lincoln statue.   We will distribute glow lights and stand together as the capitol shines blue for autism.

Please help us prepare for this night of unity by registering at www.lightitupblue.org