Category Archives: Advocacy


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)