Candidates for the November 2014 elections were given the opportunity to respond to a few questions relating to autism. The following responses are from Doug Owens, candidate for U.S. House District 4.
My wife Cynthia and I are the parents of four wonderful children, one of whom has high-functioning autism. Autism is not an "issue" for us. We have lived and continue to live the concerns of parents with children on the spectrum. When elected, you can count on me to work tirelessly to ensure that all individuals on the spectrum and their families have the resources they need to address the condition and flourish in our society.
Wandering: Wandering (or elopement) is an issue that affects around half of children with ASD, as well as many people with Alzheimer’s and dementia. There are substantial costs involved with search efforts that often require emergency personnel.
In a UAC survey, 20% of respondents reported wandering incidents that involved police. Another 41% had wandering incidents, but no police involvement. It's a concern for 81% of respondents.
In a recent policy change, DOJ grants are allowed to be used to provide tracking devices for vulnerable populations (including those with autism). This same funding pool is used for many high priority law enforcement needs, such as bulletproof vests. Avonte's Law (S 2386), introduced in 2014, would allocate $10 million specifically for tracking devices.
Would you support Avonte's Law?
Yes. When elected to Congress, I will strongly support Avonte’s Law and would also be proud to introduce the House version of this bill. I understand that Wandering is one of the greatest fears for families of autistic individuals. The option of tracking devices would not only help reduce the stress families face when their
child wanders, but would also reduce the cost and length of potential searches. The $10 million in grants provided in this bill would help make tracking devices an accessible option for working families. Utah’s incidence of autism, which is one in 54 children, is higher than the national average, and I would fight
hard for Utah to receive a larger number of these grants.
Education: Education is a priority for many UAC members. Kids on the spectrum often require special education resources.
What do you see as the current state of the Utah education system, including Special Ed, and what steps would you support to improve it?
Ensuring that every child receives a quality education is one of my highest priorities. I understand the unique needs and demands involved with educating autistic children, and I am committed to supporting measures that provide them with the best education possible. All educators, not only special education teachers, are vastly under-valued and under-paid, and we must figure out ways to bring more money into the Utah education system that will provide our educators with the resources and flexibility to address the most pressing needs
of their students. This is especially true for special education needs. As a Member of Congress, I will work to ensure any that revisions to the No Child Left Behind Act would increase funding for and reduce the burdensome requirements for improving special education.
Autism CARES: The rate of autism continue to rise, and is now estimated at 1 in 68 nationally. The rate in Utah is 1 in 54, the second highest in the country after New Jersey. Understanding autism is important to the U.S. and especially so to Utah. The Combating Autism Act of 2006 was set to expire September of 2014-thankfully the Autism CARES Act was signed into law August 8 which extends the Combating Autism Act. This bill will: Dedicate another five years of federal funding for autism activities at an annual level of $260 million. Designate an official in the U.S. Department of Health and Human Services (HHS) to implement the IACC's strategic plan. Direct HHS, with input from the autism community, to examine the demographics and transition needs of adults on the autism spectrum.
Would you (or did you) support Autism CARES?
Doug Owens:Research is a crucial component of developing the most effective therapies and treatments for the entire autism spectrum. I would have proudly co-sponsored and voted for the recently passed Autism CARES Act. With Utah having the highest rate of autism per capita in the nation, the reauthorization of these programs is vital to Utah. Through these programs we can work toward discovering the causes of autism, identifying cases as early as possible, improving awareness and services, and overall improving the quality of life for those with autism. Though this reauthorization is a critical step, I would also work to make sure that these programs are fully funded through the appropriations process.
ABLE Act: For many parents of disabled people, the fate of their children after they are gone is a major concern. Currently, the best way to provide for their children after they are gone is to establish a Special Needs Trust, which can cost thousands of dollars in legal fees to set up.
A cost-effective way to begin saving is proposed in the ABLE Act (HR 647). The legislation would amend Section 529 of the Internal Revenue Service Code of 1986 to allow use of tax-free savings accounts for individuals with disabilities. As is now done for college tuition, the bill would make tax-free savings accounts available to cover qualified expenses such as education, housing, medical, and transportation. The bill would supplement, but not supplant, benefits provided trough private insurance, the Medicaid program, the beneficiary's employment, and other sources.
Would you support the ABLE Act?
Yes. I understand how expensive it can be to care for a child with autism. I know that those expenses don’t end when the child becomes an adult. The ABLE Act, which I would proudly cosponsor, would help individuals save money to cover expenses like housing, transportation, education, and other types of necessary assistance. These tax-exempt saving accounts will help reduce the financial stress and difficulties autistic individuals and their families face when planning for their future. Most importantly, these accounts would not impact eligibility for disability benefits. Individuals with autism and their families need the financial flexibility and freedom to live a life that suits them best.