We’re seeing an interesting trend this year: more and more school employees who specialize in autism spectrum disorder (ASD) are being nominated for LifeChanger of the Year. Source: NLG
There are a couple of things happening here. First off, more and more children are being diagnosed with autism. According to the US Centers for Disease Control (CDC), one in 68 children born today receive the diagnosis, a number that continues to grow.
Autism Speaks, an autism advocacy organization, describes autism as a “general term for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.”
And as this number climbs we also know that schools and communities as a whole need to have the support systems in place to meet the unique needs of their autistic population and to nurture their unique learning styles.
So with the rise in autism prevalence and awareness, we’re seeing more and more parents and school employees paying the support forward and thanking those educators who are helping children with this disorder make great strides.
Take Annie Granger, one of National Life’s LifeChanger nominees, for example. Annie is helping non-verbal students in her Athens, Alabama, community find a voice through an iPad initiative. The iPads contain language development apps that utilize symbols, pictures and speech devices to help non-verbal students communicate their thoughts. She has also created a sensory integration room including a trampoline, crash pad, lava lamps, bean bag chairs and a ball pit to help students process different senses.
Annie is a special education teacher at a traditional school. But, we’re also seeing a rise in nominations for teachers who work at specialized education centers that cater to autistic children. While some children with autism are able to learn in mainstream classrooms with or without the help of additional supports, others might not be able to learn using traditional strategies, or they might have behaviors that require a different learning environment. The Cumberland Academy of Georgia serves students with autism in grades 4-12. In addition to offering traditional subjects, the school gives students the opportunity to develop their social skills and talents through activities such as cooking, creating art and running a fish hatchery. We’re so proud that three teachers at Cumberland Academy were nominated for this year’s LifeChanger of the Year Program.
Educators like Annie and schools such as Cumberland Academy are making significant strides in the lives of their autistic students and for their parents and caregivers. But, if you are a parent or a caregiver of an autistic child, you know all too well that the unique needs of your child aren’t just required during school hours.
While the impact on each family is different depending on where your child falls on the spectrum, there’s no arguing that your family will face additional financial strain and unique planning challenges. Some of the stats are staggering.
On average, it costs families $60,000 per year to support a child with autism.
According to a study from JAMA Pediatrics, 79 percent of the costs of taking care of a child with autism are due to services such as special schooling, after-school care and medical costs
The total lifetime cost of raising a child with autism is estimated at more than $1.4 million
It’s no wonder that raising an autistic child can be more expensive when you factor in special schooling, services, equipment, and health and medical related expenses. Furthermore, there’s the loss of income. If you or a spouse made the potentially hard decision to quit your job or postpone your career in order to provide full-time care, you’re not alone.
Being able to take advantage of any and all programs and benefits available at the local, state and federal level is critical for you. Benefits and programs are different across states – even counties – so it’s valuable to meet with a local special needs attorney and financial advisor who can help leverage all available assistance.
We’re learning that early intervention is critical but we also know that the need for assistance doesn’t stop when children turn 18. In fact, there’s a whole new set of challenges as your child reaches adulthood and you, as the primary the caregiver, ages as well. There is a wave of autistic children approaching adulthood right now. In fact, the wave is so massive that it has been dubbed the “autism tsunami.”
Working with an attorney to set up a Special Needs Trust can also be an important step when it comes to planning for the future and making sure many benefits and services will continue to be made available.
A properly drafted Special Needs Trust allows children with autism to enjoy the use of the assets held in the trust for their benefit, without unintentionally disqualifying them from essential government programs (SSI, Medicaid, etc.). Special Needs Trusts can even provide care that is not always covered under insurance, such as occupational therapy. They can also serve as a good alternative to a 529 plan allowing autistic children to piggy back on the earlier education they received – hopefully from an “Annie Granger” or “Cumberland Academy” – without disqualifying them from other important benefits.
As a parent or caregiver, you are your child’s primary teacher. And hopefully, their days are full of additional educators who are helping to unleash their talents and open their worlds as many of our LifeChangers are doing for their autistic students. If your child has been fortunate enough to have a LifeChanger in their life then consider nominating that school employee for LifeChanger of the Year.
Looking for even more resources? The list below might be helpful.
NCSL – Many states require insurers to cover the costs of treating autism. The National Council for State Legislature has a great list of how these laws differ by state.
Autism Now – When children with autism become adults, there are several resources that can help them live independently. Autism Now has a great piece that discusses how people with autism can obtain housing assistance, including subsidized rent and home choice vouchers.
Autism Apps – Autism Plugged In has a great list of 20 free apps that can help children with autism
Do 2 Learn – Although this website is primarily for teachers, Do 2 Learn has thousands of pages filled with activity cards, learning games and transition guides for learning life skills.
Wings for Autism – Taking a child with autism flying can be challenging; many of their normal behaviors can be misinterpreted by security agents or airport personnel. Wings for Autism is a free program from The Arc that holds “flight rehearsals” that allows individuals with autism to rehearse an airplane flight with their families.
National Park Passes – Want to go on a fun trip? The US National Park Services has an application for lifetime passes for individuals with disabilities such as autism. The passes offer free/discounted admission to over 2000 national parks.
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