Category Archives: Advocacy


Judge: State must cover medically necessary autism services

Link to the Journal Star Story

Nebraska must pay for autism services — and any other treatments deemed medically necessary — for the state’s Medicaid-eligible children, a Lancaster County judge has ruled.

In a 19-page order filed Tuesday, District Judge John Colborn found a state Department of Health and Human Services policy that excluded Medicaid coverage of Applied Behavior Analysis services, often prescribed to treat development disabilities like autism, violated federal law.

The judge also agreed to certify the case as a class action, meaning his order applies to all children in similar situations in Nebraska. And he also ordered the state to stop enforcing its unlawful policy.

A day later, the Nebraska Appleseed Center, which filed the suit on behalf of two unnamed boys now 6 and 7, hailed the decision as a big win.

“This ruling is an important victory for Nebraska families with children who have been wrongfully denied access to essential mental and behavioral health treatments that were recommended by their doctors,” said Appleseed legal director Sarah Helvey. “The court’s ruling will allow more children to get the care they need to have the best possible future.”

Asked how HHS would move forward as a result of the ruling, spokeswoman Kathie Osterman said: “I can tell you that we’re reviewing the decision and working with the Attorney General’s Office to determine our next steps.”

The state has 30 days to decide if it wants to appeal.

Helvey said Nebraska Appleseed is looking forward to working with the department “to begin covering these vital treatments immediately for the hundreds of Nebraska children who need them.”

She believes Medicaid-eligible children should be able to get the treatments immediately.

It’s been a long time coming, Helvey said.

In 2012, working with the National Health Law Program and Husch Blackwell LLP, the Nebraska Appleseed Center filed the lawsuit on behalf of the two Nebraska boys against then-HHS director Kerry Winterer and Vivianne Chaumont, then director of the Division of Medicaid and Long-Term Care.

At the time, one was a 4-year-old diagnosed with disruptive behavior disorder, autism spectrum disorder and attention deficit hyperactivity disorder, among other issues.

The other was a 3-year-old diagnosed with Pica, an eating disorder, and stereotypic movement disorder, characteristic of repetitive, purposeless movements that can cause bodily harm.

Doctors for both boys, who are from separate families and both eligible for Medicaid, had recommended treatment that included Applied Behavior Analysis services.

But Magellan Health Services, a contractor that reviews requests for mental and behavioral health treatments for Medicaid-eligible children, denied the treatments based on HHS policy.

The policy categorically excludes Medicaid coverage for Applied Behavior Analysis services and behavior modification management.

Neither of the boys got the treatment that Nebraska Appleseed staff attorney Robert McEwen said has been shown to prevent the further progression of self-injury for developmentally disabled kids and, if provided at an early enough age, can put them back on the developmental track where they started.

“It’s been a long haul for them,” McEwen said of the boys and their families, with whom he talked on Tuesday. “It was a really happy conversation.”

He said the judge was clear about coverage of services for children under Medicaid: If a service can be covered and is allowed under Medicaid, it must be covered by the state when it’s deemed medically necessary.

Moving forward, McEwen said, the decision not only will help ensure Medicaid-eligible kids in Nebraska get Applied Behavior Analysis services but also other treatments deemed medically necessary.

He called it a big step forward for Nebraska children.


KMTV Action 3 Omaha logo

KMTV interviews ASN: Republican debate’s spotlight on autism helps raise awareness

Republican debate’s spotlight on autism helps raise awareness

Watch HERE

By Miranda Christian.

OMAHA, Neb. (KMTV) – Republican candidate Donald Trump highlighted the autism and vaccine issue at the Republican debate Wednesday night. Trump suggested that vaccines can cause autism.

Coincidentally, the next day was “The Big Give for Autism” fundraiser, held by the Autism Society of America.

The Nebraska chapter’s vice president Wendy Hamilton said that when the topic of autism appears in the national spotlight, they try to look at the positive side.

“Any publicity is good publicity. I would hope that with the conversation being made so public, people take an opportunity to say, ‘Wait a second, I think I want to look into that a little bit more,’” said Hamilton.

The vaccine debate has been around for years and Trump is bringing it back to the forefront.

“I am not here to tell people what to believe or not to believe, except educate yourself,” said Hamilton

Autism being discussed during the debate could not have come at a better time for ASA. A national all-day, online fundraiser would take place Thursday. The money raised will help the 21,000 Nebraskans who are diagnosed with autism.

“I think anytime it is brought up in conversation is good, the timing couldn’t have been more perfect for us giving we are doing a major fundraiser, so for that, we say thanks,” said Hamilton.


LB 591 Nebraska ABLE Act Legislation Call to Action

LB 591 – Create the achieve a better life experience program and provide for adjustments to taxable income.

Public Hearing Wednesday March 11, 2015 Room 1524 2:00 PM

Join the Autism Society of Nebraska along with other organizations to encourage senators to move LB591 out of Committee and support this new bill that gives Nebraska Families a tax-free savings option for individuals with special needs.

Email your senator and urge support for this bill.  The senators listed below are committee members that need to hear your voice!

Email Template Click here

Please submit your letter of support to the emails below no later than Tuesday March 10th, 2015 at noon, thanks!

Senator Lydia Brasch

Senator Davis Albert

Senator Mike Gloor

Senator Burke Harr

Senator Jim Scheer

Senator Paul Schumacher

Senator Jim Smith

Senator Kate Sullivan


LB 163 for a Statewide Public Safety Platform


On Thursday, 1/22, I had the opportunity to testify in front of the Government Committee in Lincoln regarding potential legislation, LB 163.  LB 163 is important for us because it would create, and provide funding for, a statewide Public Safety platform that would help all families.  At the heart of it, it would implement a system known as Smart911 which would allow families (for free) to create “Safety Profiles” which can include things like photos and physical descriptions, health and medical information, rescue needs and much more.  ABC News and Good morning America recently called it a “Personal Safety Game Changer” in this story:

You can learn more about LB 163 here:

Here is where we need your help…  The bill’s first hurdle is to get out of committee so we need your help.  If you are a constituent of one of the following Senators, we need you to email them and let them know you are in support of LB 163.

Committee Chairperson:  John Murante  District 49  Sarpy County

Vice Chair: Tommy Garrett   District 3       Sarpy County

Dave Bloomfield                   District 17     Wayne County

Joni Craighead                     District 6       Douglas County

Mike Groene                         District 42     Lincoln County

Matt Hansen                         District 26     Lancaster County

Tyson Larson                        District 40     Holt County   

Beau McCoy                         District 39     Douglas County

After the bill moves out of committee we will direct the efforts to a larger audience across the entire state.

I’ve provided a sample email below.

Senator _________________,

My name is ______ _______ from ________.  I am reaching out to you to voice my strong support for LB163 currently being reviewed by Government, Military and Veterans Affair Committee.

LB 163 can save lives by enhancing location information and delivering additional details about the caller, their family, and the location that will help Public Safety respond faster and more effectively. As part of a nationwide, secure Public Safety network, LB 163 would be able to assist our community members not only while they are in Nebraska, but nationwide.

LB 163 would make a difference by allowing 9-1-1 and first responders to instantly have photos and physical descriptions for missing persons, dramatically reducing response times and increasing successful rescues.  LB 163 would also create a much needed next of kin registry that could be used to quickly identify and locate family members.

Thank you very much for your support of LB 163 and the tremendous, positive impact it can have here in Nebraska.

Thank you for your time,

<insert signature>



City, State, Zip






President signs ABLE Act into Law

President Obama on Friday signed into law the Achieving a Better Life Experience(ABLE) Act which will allow families with children with disabilities to save for college and other expenses in tax-deferred accounts. The legislation was co-sponsored by Sens. Bob Casey (D-PA) and Richard Burr (R-NC). The ABLE Act, first introduced in 2008, amends the Internal Revenue Service Code to allow use of tax-free savings accounts for individuals with disabilities. Families will be allowed to use the funds in the savings accounts to cover education, housing, medical and transportation expenses, among others. Now that the President has signed the bill into federal law, it will be up to the individual states to enact the bill. Until now, families with children with disabilities had little incentive to save for their future. If they saved more than $2,000 for college, an apartment or transportation to work, they risked losing critical benefits for their children, including medical and supplemental coverage. This piece of legislation is an important step toward empowering people with disabilities to achieve independence and affirms self-sufficiency.

The Autism Society is proud of our affiliate network and advocacy organizations across the country that took a leadership role in advocating for this bill and for all people with disabilities.


Senate Approves ABLE Act

Last night, the U.S. Senate passed the Achieving a Better Life Experience Act (ABLE) — a victory for grassroots advocacy for parents and people with disabilities. The Autism Society has worked with many partners in the disability community and with you, our members, to get this bill passed.

The ABLE Act allows for savings accounts for individuals with disabilities for certain expenses, like education, housing, and transportation, without jeopardizing certain important federal benefits such as SSI and Medicaid. The funds saved in these accounts, if managed correctly, can be another tool in planning for the lifetime support needs of an individual with disabilities. Up to $14,000 a year can be put in an ABLE account, with a cap of $100,000.

The bill must now be signed by the President to become law. Once the law is implemented in each state, the ABLE Act will allow the following:

  1.  Enable people with disabilities or family members to put up to $14,000 per year in the account, up to $100,000 total amount.
  2. ABLE accounts could generally be rolled over only into another ABLE account for the same individual or into an ABLE account for a sibling who is also an eligible individual.
  3. The funds must be spent on qualified expenses related to the individual’s disability, such as health, education, housing, transportation, training, assistive technology, personal support, and related services and expenses.

Sadly, the man who conceived and worked tirelessly to pass the legislation, Steve Beck of Burke, Virginia, died suddenly last week. Steve was 44 years old and the parent of two daughters, including Natalie who had a disability. Steve, along with a group of parents around his kitchen table, conceived the idea of a savings account for his daughter, similar to the 529 account used for college savings. The passage of this Act is a wonderful tribute to the memory of Steve Beck.

As the process to open accounts for our family members with autism develops, we will keep our members informed as to next steps.

Thanks again for all your help on getting this legislation passed!


LB 505 Rally Email to your Senator

Feel free to copy and paste or just use parts!


Dear Senator _____________,
LB505 will come out of committee on Tuesday, April 1.  I ask for your vote in support of this critical legislation when it comes to the floor.

The autism community and all three major insurers in Nebraska have agreed to the language of this bill.  We understand the scope and limitations of LB 505 and we strongly support its passage.

We believe this legislation will affect almost 900 children with autism.  Without your support of LB 505, insurance companies will continue to deny coverage for medically necessary autism treatments for these 900 children.  Without your support of LB 505, many of these children will never speak.  They will never have a meaningful relationship.  They will never go to college or get a job.  Without your support of LB 505 most of these children will require intensive special education and be dependent on a lifetime of state-funded adult disability support services.
Some legislators have noted that future changes to the ACA may include the addition of autism treatments.  This may come and we will continue to lobby our federal legislators.   But today we are asking you, the members of the Nebraska Legislature, to help those children who are within your power to help by passing LB 505.
If you’re concerned about the cost of enacting LB505, don’t.  Thirty-four other states have enacted laws similar to LB 505.  Actual claims data from states whom were among the first to enact such legislation show the average cost of coverage is 31 cents per member per month.
The cost of not providing appropriate treatment to individuals with autism has been estimated to be $3.2 million per child over their lifespan (Ganz, 2007).  Much of this expense is associated with intensive special education, adult disability services and decreased productivity.
Failure to enact LB 505 is the high cost option.
Some legislators have expressed reservations about supporting LB 505 because it is a mandate and they are opposed to mandates. .  Every law the legislature enacts is a mandate that our elected officials deem appropriate for the protection and betterment of Nebraska’s citizens.
LB 505 is a mandate that will afford access to medically necessary treatment for children with autism while saving the state millions of dollars per child in special education and adult disability supports.  LB 505 is a win-win proposition for Nebraska.
The prevalence of autism as reported by the Centers for Disease Control and Prevention (CDC) is now 1 in every 88 children.  This represents a 1,000 fold increase in the past forty years.  Autism is an epidemic and a public health crisis.  Please pass LB 505.

(Your name)