Blog #5D (1-3) Resources & Insurance with < My Thoughts > by Sara Luker

< My Thoughts >     LOOK for RESOURCES in your area through personal contact or by searching online. My search was… "Autism Resources & Services near me."  Here is what came up (in alphabetical order) …

• Autism Diagnosis Specialists
• Autism Support Groups
• Colleges and Hospitals with Autism programs
• Community Autism Programs
• Community Autism Service Providers
• Easter Seals Autism Program & Phone list
• Parent’s Guide to Autism
• Physicians specializing in Autism
• Respite Care for Autism
• Schools with Autism Programs
• Therapists Specializing in Autism

There are many more listings, I’m certain and of course there are many Autism Organizations, statewide and nationwide. There may even be those which offer free programs and clinics. Realize, of course, that they will probably ask to use your data for a study or research. Smiles.
 
< My Thoughts >     You may want to check all of your INSURANCE for evidence of coverage, also your spouse’s benefits, & limitations; deductible, co-pay, co-insurance, and network of providers available to you. This is in addition to checking on what is possibly free from your city, state, county, and government services.

• Drug coverage
• Urgent care
• Primary care
• Dental/Vision
• Lab Services
• Medical Equipment
• Surgery
• Therapists
• Chiropractors
• Home Health Care

Look for the deep pockets before you overextend yourself on your credit card or mortgage your home. But I did raise my credit limit. It’s a bit of a stress reliever to know I can use the card to take advantage of opportunities which may arise and that might speed up the process or put my child at the head of the line. Of course, I only use it when time is of the essence…I use caution…and exhaust all ‘free’ sources first.  

Siri, K. & Lyons, T. (2014) tell us to also remember once your child has an official diagnosis they are entitled to Medicaid, which has some pros and cons. Your child can qualify for Supplemental Security Income (SSI), but this and the Medicaid benefits will only go so far. If either parent is a veteran, there may be VA benefits or services available. Check online for biomedical treatment options covered by TRICARE (Military entity). Also check on Supplements, Respite Care and other programs like STOMP and Autism Salutes (also military).
 
Keep track of medical expenses for tax season and know the name of the “Commissioner of Insurance” for your state, should you get the runaround from your insurance plan. You are most likely entitled to Medicaid and a Handicapped Parking sticker for easier access to buildings providing services for your child. The DMV has paperwork to be filled out by your physician.

< My Thoughts >           “…tax season…”
 
Check with your tax preparer, before Tax Season! Even if you hold a fulltime job elsewhere, you still may qualify as a ‘paid’ caregiver as the parent or grandparent of a Veteran’s disabled child. Yes, autism is considered a disability, as hurtful as that may sound.
 
Check all insurance policies of both parents. Which one will provide your child with more coverage? This may also help you decide which parent may have to reduce or rearrange their work schedule to meet the needs of your child’s many appointments and therapies.

While there is some help from the government (for medical bills), most notably Medicaid, there is not nearly enough. Your child may qualify for Supplemental Security Income (SSI), but this and Medicaid benefits will only go so far. You will likely dip, if not drain, savings… especially if you pursue alternative therapies. Remember that insurance is a business – your provider wants to take in more money than it pays out. This is definitely an area in which the squeaky wheel gets the grease.
 
Parker (2017) suggests that Medicare is pushing payments based on clinical outcomes. He reminds readers that it takes a village of doctors, counselors, therapists, medical professionals, specialists, and agency administrators, and of course parents to create a ‘best possible life’ for those with autism.

REPOSTING of BLOG #5E ~ The LAW & AUTISM… with < My Thoughts > by Sara Luker

The three major federal laws are Individuals with Disabilities Education Act (IDEA), Section 504 of the Rehabilitation Act. And, the Americans with Disabilities Act (ADA) which says that tethered and trained service dogs are allowed where food is served, when accompanying the person with a disability.

But, sterile settings such as hospitals, surgery centers, etc. may legally prohibit these animals. Check www.ADA.gov for specific information.

State and Federal governments have introduced laws in many areas. Some of them are:

• Food & Drug Administration (FDA)
• Drug Enforcement (DEA)
• Governing Fetal Stem Cell Transplants
• Pharmaceuticals (including Medical Cannabis) & Insurance
• Education & Habilitation
• Employment & Support
• Offender Laws & Forensic Issues for the Courts

< My Thoughts >        “…Tethered and trained service dogs are allowed where food is served…”

Horoupian (2011) quotes the Americans with Disabilities Act’s (ADA) mandate of allowing use of service animals in public, including –

• Restaurants
• Hotels
• Retail establishments
• Theaters,
• Concert halls

Effective March 15, 2011, the types of animals are limited to animals which provide –

• Assisting during a seizure
• Alerting to allergens
• Retrieving medicine or phone
• Providing physical support & stability for those with mobility impairments
• Preventing or interrupting impulsive or destructive behavior
• Pulling a wheelchair
• Assisting sight-impaired persons

The regulation makes it clear that the animal must provide work or tasks under the definition of service animal; not just for well-being comfort or companionship.

Yen & Mao (2011) say that the Individuals with Disabilities Education Act (IDEA) is the primary law that is invoked when parents are trying to access services because it covers qualified individuals from age 3 to age 21 for educational needs. It includes Family Educational Rights & Privacy Act (FERPA) and Least Restrictive Environment (LEA).

​There are procedural safeguards in place and families of children with autism may need legal help to navigate the system when gaining access to programs as children and adults. Also that parents often encounter unanticipated challenges in their efforts to find optimal treatment and educational placement for their child. One of the most difficult obstacles involves dealing with the legal aspects.

Prior to this, Finkel (2010) wrote that the law in Illinois was ‘fuzzy’ when it came to ‘service dogs’ in the school classroom. In addition, he reports the school district’s attorney as saying having a dog in the classroom has safety issues and is a distraction. “It’s potentially disruptive for us… We don’t feel that it is necessary for the student’s success.” The court, however, ruled in favor of the family.

REFERENCES used here:

Finkel, E. (2010). Who Let the Dogs In?; The National Pulse; V96:4.

Horoupian, G. (2011). Service Dogs in the Restaurant: Justice Department’s Rules; Retrieved from: franchising.com.

Yen, J. & Mao, A. (2011). Laws that Affect Parents Raising a Child with Autism; Brown University Child & Adolescent Behavior Letter; V27:1, p1-6. 

First responders learn how to recognize Autism Spectrum Disorder by D.K. Wright; with < My Thoughts > by Sara Luker
 
Article Posted: Dec 10, 2019 / 08:10 PM EST / Updated: Dec 11, 2019 / 08:24 AM EST
 
BELMONT COUNTY, Ohio (WTRF) – A person who won’t look you in the eye, who might be unsteady on their feet, agitated or pacing–police often tend to take these as signs of guilt, or at least of being under the influence.
 
In Belmont County, Sheriff Dave Lucas hosted a seminar for ‘First Responders’ about how to recognize Autism Spectrum Disorder and how to interact with people who have it.
 
< My Thoughts >     “A person who won’t look you in the eye, who might be unsteady on their feet…”
 
Green (2013), in her review of various articles, discovered that much of the literature brings up the ‘invisibility of autism’. Families seem know long-term stress and anxiety because of experiencing societies’ expectations of the person with autism, the ‘invisible disability’.
 
People with autism are seven times more likely to interact with police. Their typical behaviors are easily mistaken for criminal conduct. “They may be using their hands, wringing their hands, and it may look like someone who’s in crisis in some way,” said Chief Deputy Jon Snowden of the Delaware County Sheriff’s Department. “They don’t make a lot of eye contact,” explained Carrie Gutowski, lawyer and ASD class trainer. “They have difficulty following directions. They may give unusual answers to questions.”
 
< My Thoughts >                 “Their typical behaviors are easily mistaken for criminal conduct.”
 
Cea (2014) says that an example of a criminal acts stemming from an obsession/special interest, for instance, was a person who stole computers in order to disassemble them. Thus fueling his passion for seeing what was inside the device.

Other factors which may predispose those with ASD to seemingly criminal behaviors would be aggressive behavior, poor social understanding, stress or anxiety from disruption of routines or perceived threatening events.

They are also 160 times more like to die of drowning. “Children with autism are very attracted to water,” said Gutowski. “We don’t know exactly why that is but we think they may like the sensory experience of how it feels when they touch it, how the light glistens off it of it.”
 
< My Thoughts >                 “Children with autism are very attracted to water…”
 
Hilton (2017) tells – Shortly after noon on October 4, 2013, a 14-year-old African American 8th grade student named Avonte Oquendo” ran out of the side door of his school and into the community. Identified as severely autistic and nonverbal, Avonte had a “strong sensory affinity for trains, cars, and water systems.”
​
Avonte’s disappearance and the discovery of his remains several months later… “The medical examiner concluded that he had most likely fallen from an embankment into the East river and drowned.” This tragedy “prompted local officials and politicians to call for review of educational policies and school-security protocols for children with disabilities…”
 
They said children with autism are escape artists. They like to go off by themselves and hide in small places.

In one case, they said a child was found hiding in the bottom drawer of the family’s kitchen stove. “Small places are sort of like a hug, right?” said Gutowski. “Like it helps them stay calm. And so they might go and climb into a nice warm car where they can get away from all the noise around them.”
 
< My Thoughts >                 “They like to go off by themselves…”
 
Until recently, Hilton (2017) continues, the voices of autistic people have been absent from the conversation about why wandering is such an issue with this population. Higashida (2013), Naoki, a 13 year-old-boy with nonverbal autism, through facilitated communication, answered questions concerning his elopement activity.

Question: Why did you wander off?

Answer: My body was lured there by ‘something’ outside. As I was walking farther from home, I didn’t feel any fear or anxiety. I had to keep walking on and on. Turning back was not permitted, because roads never come to an end. Roads speak to us people with autism, and invite us onward. Until someone brings us back home, we don’t know what we’ve done and then we’re as shocked as anyone.

Belmont County Sheriff Dave Lucas says they get more calls from schools lately, about students with autism. “If they’re overloaded (sensory overload), they might start acting out,” said Sheriff Lucas. “And if someone doesn’t know how to properly deal with it, we could cause or create more of a problem.”
 
< My Thoughts >         “…get more calls from schools lately…”
 
Walker (2016) claims that students as young as 16 are issued summonses for non-criminal offenses, said Advocates for Children, an educational activist group.  Last year, Director of the School Justice project for AFC, Dawn Yuster recalled that a 9-year-old student with disabilities was held by the NYPD in Velcro handcuffs. “It was devastating to the family to see their child in this situation,” she said. “It traumatizes the child for life.”

Yuster advises schools to provide crisis de-escalation training to public safety officers and faculty. Claiming there is a lifetime of “damage” to society when students acquire a record.
 
They say many people with autism can drive. But when pulled over in traffic, they may be slow to answer, unsteady or slurring their words. Officers learned that if they don’t smell alcohol, it’s OK to asks directly, “Do you have autism?”
 
“Absolutely,” said Chief Deputy Scowden, “it’s fine for the officer to ask people if they are autistic. It can save a lot of misunderstanding. ”
 
< My Thoughts >         “…it’s OK to ask directly, “Do you have autism?”
 
In Cariello & Capell (2015), Carrie Cariello remembers talking about  having autism with her son –
 
Jack, your autism is great. It is not something to be embarrassed about or that you should want to change about yourself. I love it. I mean, we all love it. It’s so interesting the way you see the world. I can’t wait to know more about it from you. I love you no matter what, I hope you know that.
 
It was Sunday morning in late September – the day after my birthday. I was fuzzily turning pancakes on the griddle while Jack perched at the counter flicking the top to the syrup open and closed and open and closed.

I was just about to tell him to stop doing that, it’s gross to put your hands all over the lid when he asked, “Why was I born with autism?”
 
“Well Jack, it’s a part of you, just like your eyes are blue and you have big feet.”
“Do all people with blue eyes have it?”
 
“No, it’s not really about your eyes. It’s like how you learn things.”

And then, in rapid fire, these questions –
“Do grown-ups have it?”
“Who else has it?”
“Where did I get it?”
 
How do I tell my nine-year-old that I love his autism but I also hate it and it’s beautiful but sometimes it’s so very, very ugly?
 
How do I tell him there are days I literally want to pull my hair out by the handfuls or, better yet, light my eyelashes on fire and run into the street screaming…
 
The trainers told ‘First Responders’ that their goal is to get them on their way to a call… reminding themselves that this may indeed be a criminal, but it may just be a person with autism.”
 
Copyright 2020 Nexstar Broadcasting, Inc. All rights reserved.
 
REFERENCES used here:

Cariello, C. & Capell, J. (2015). Someone I’m With Has Autism;  eBook 2015 Edition.

Cea, C. (2014). Autism & the Criminal Defendant; John’s Law Review; Summer, V88:2; p495-529.
 
Green, L. (2013). The Well-Being of Siblings of Individuals with Autism; ISRN Neurology; Vol 2013; Art. 417194. 
 
Higaskida, N. (2013) The Reason I Jump: The Inner Voice of a Thirteen Year Old; eBooks Edition.
 
Hilton, L. (2017). Avonte's Law: Autism, Wandering & the Racial Surveillance of Neurological Difference; African American Review, V50:2, p221-235.
 
Walker, T. (2016). School safety data say Black students face more arrests, summonses than white peers; New York Amsterdam News (Education Section); Sept./Oct.:39.