By Jeff Noble / Staff Writer
What options do families and caregivers of persons afflicted with autism have? Where can they get help, answers and solutions? And what can they do to pass that information on to others?
Those were some of the topics discussed during an autism conference and workshop, held Friday at the Corbin Center. Sponsored by the Corbin-based non-profit organization Autism Spectrum Solutions of Kentucky, the three-hour session featured three speakers who brought their knowledge and expertise on autism-related issues to the table.
Some 35-40 persons were on hand at the session. Whitney Durham, the organization’s President and CEO, said the autism conference and related workshop was the first to ever be held in southeastern Kentucky.
Durham also told the audience she understands first-hand the issues facing many of them.
“My son is six and has autism. He was diagnosed when he was two years old. You start researching and find ways to help your child. It seems like it’s an uphill battle if you’re a parent of an autistic child. Maybe I’m chosen to do this, but I want to help others,” she said at the start of the workshop.
Larry Taylor, the Executive Director of the Kentucky Autism Training Center (KATC) spoke first. Speaking about behavior and communication with autistic children, he told those attending how they can understand to contribute constructively to their student’s individual education program, how to recognize that knowledge and preparation can minimize conflicts, and learn how important communication skills for people with autism can be.
“Here’s what we know. Early intervention is the key to learning for an autistic child. Communication is vital to improving the quality of life for individuals with autism. When child-specific supports are in place, individuals achieve. All the programs need to be very specific, and individualized. And, collaborative relationships enhance services,” he stated.
Taylor, who has over 23 years of experience in education and holds two degrees from Cumberland College (now the University of the Cumberlands) in Williamsburg, noted that autism is a spectrum disorder, referring to the wide range of symptoms, skills and levels of disability or impairment that persons with autism can have.
“When you’re talking about your own child, it’s hard to be objective. … We’ve learned a whole lot how to address challenging behavior, and how adults need to learn about it too. …We know more about how to educate individuals with autism than any other time in history. We have a moral obligation,” he said.
Taylor added that Cumberland River Comprehensive Care will sponsor a forum in Corbin on September 6 from 10 a.m. to 4 p.m. on information and communication for parents and caregivers of an autistic child. He encouraged those attending at the conference to attend next month’s forum.
Before ending his presentation, he asked the audience to check the KATC website at www.louisville.edu/kyautismtraining/, other related websites, and information provided at the conference for more ways to stay connected.
KATC is the state’s leading resource on Autism Spectrum Disorders, and is located on the University of Louisville campus.
After a brief break for a light snack and refreshments, the audience heard from Whitley County Judge-Executive Pat White, Jr., who told them, “I think we’re here because we love our kids. I really appreciate that people are here on a Friday night to advocate for change.”
He was followed by Sarah Johnson, an Advocate with the independent state agency Protection and Advocacy in Frankfort. Telling the audience, “We advocate for the rights of all persons with disabilities,” Johnson discussed legal rights under the Individuals with Disabilities Education Improvement Act.
The act is known as IDEA 04, which is a reauthorization of the original IDEA act, and guarantees all students between 3-21 years of age the right to a free, appropriate public education designed to meet each student’s individual needs.
She brought up the six principals of IDEA that guarantee the rights of children with disabilities and their families. “One is free appropriate public education, the second is an appropriate evaluation, and number three is an individualized education program. The fourth is least restrictive environment, the fifth parent and student participation in decision making, and the sixth one are procedural safeguards.”
In addition, Johnson discussed in more detail the Individualized Education Program, or IEP, a written document that specifically tells what special education services will be provided, and how they’ll be provided. Also brought up was the Independent Educational Evaluation, or IEE — defined by the website About.com as “an evaluation of a child for the purposes of determining a special education program that is performed by personnel outside the school system.”
“Both parents and schools have a role,” she reminded those at the workshop.
Lexington attorney Robert McClelland later spoke to the group about estate trust planning, guardianship planning and special needs trusts. He explained that for parents of autistic children, estate planning matters are extremely complicated. To simplify the problem, third party trusts can be created, and need to be done before the parent or parents die.
McClelland — recognized in Kentucky for his expertise in elder law, which includes legal issues and topics facing older adults and their families — also discussed the benefits from Social Security Disability Income (SSDI), Medicaid, and Supplemental Security Income (SSI).
At the conference and workshop, Durham noted once her organization is prepared to financially help families and individuals affected by autism, they would post on their website www.autismspectrumsolutions.org that family grant applications would be accepted. She added who gets the applications would be determined by votes from the organization’s board of directors. If the family becomes eligible, they could receive treatments for AIT (Auditory Integration Training), hyperbaric oxygen, biomedicine, lab testing, equine therapy, chiropractic care, and from a doctor specializing in autism.
“Our goal is to help with treatments, information, hope and encouragement. I hope people leave here not feeling alone, but inspired and enriched,” she said.