Even in states requiring health insurers to cover autism treatments, a new survey suggests that uncertainty about the mandates is calling into question the effectiveness of the laws.
In the survey of more than 900 families affected by autism who live in states requiring coverage, more than a quarter said they were unaware of the rules in their state.
And among those who were familiar with their state’s autism insurance law, more than half said they didn’t know if their insurance plan was included.
The survey released Thursday was conducted by the for-profit patient advocacy company MedClaims Liaison and Autism Speaks, which has heavily lobbied for autism insurance mandates in the states. The findings paint a picture of families that are confused at best by the coverage requirements.
Families participating in the survey came from Texas, Pennsylvania, New Jersey and Connecticut — where autism insurance laws are already in place — as well as New York and California, which are currently implementing such requirements.
More than half of families said some providers they used didn’t accept their insurance. And, most described their autism coverage as “poor” or “unacceptable.”
“The results of this survey clearly indicate that passing autism insurance reform… is just the first phase of helping families access the services and treatments their children need,” said Peter Bell, executive vice president of programs and services at Autism Speaks. “Once a bill is enacted, we must turn our attention to implementation and enforcement.”
Currently, 29 states have passed laws requiring that health insurers cover autism treatment, according to Autism Speaks. In most cases, the laws require certain plans to cover services like applied behavior analysis, or ABA therapy.
We still have to do a little dance to prove anything before services are covered. Asking for doctor/therapist notes and delving into paperwork nightmares that exhaust families to the point that they just give up and move on. It’s a delay tactic learned from school districts….
They lobbied for private health insurance to cover autism services, but it is clear that it does not apply to state Medicaid recipients! I have not found one doctor or center that takes Medicaid to provide services for my son in St. Jospeh County in Indiana.
why would anyone want the same therapy (applied behavior analysis” or want to pay for the same ABA therapy that was given at the Judge Rotenberg Education Center. Autism Speaks and others have been peddling ABA for years…what part of ABA doesn’t work do they not understand? Stop pushing to ignore the dignity of our minds and human beings. What ever…
^ i meant “as human beings”
Autism Insurance mandates are pretty useless because they only require fully-funded plans to adhere to the laws. Fully-funded plans only account for about 15% of insurance policies. The rest of us 85% who have self-funded plans are pretty much discriminated against by both our legislators and the insurance companies. How about writing mandates that require ALL insurance policies to cover Autism?
I should point out, that as an Autistic with Cerebral Palsy & on MEDICARE, I am not able to get any “private” Supplemental MEDICARE coverage to cover the 20% “Doughnut Hole” that MEDICARE does not cover, because I have “pre-existing” conditions (Autism & Cerebral Palsy).
If I end-up in the hospital, I am “screwed”, period.
Anyway, I will be Age 54 on Tuesday next week.
“Mandates” mean “____” here in New Hampshire.
I was @ the “signing” by Governor Lynch of a “Mandate” Bill requireing Private Insurers to cover Autism Treatments/Therapy, but the Insurance companies here in New Hampshire weaseled their way out of them.
All it was was a “feel-good” photo-op, with “no substance.
Obviously Carmen has little knowledge of ABA and what REALLY was happening at JRC! 2 TOTALLY different things! ABA is used to teach appropriate and expected behavior and it DOES NOT include shock treatments to achieve the goal!! ABA worked for my daughter and I’m more than satisfied with the results! ABA does work–but maybe not for everyone! Research has proven over and over that it is an effective treatment—but results of findings also indicate it isn’t effective for a SMALL %age of individuals with ASD.
The JRC is just downright sick if they think that kind of treatment will make patients “conform”!
Has anyone had any luck getting HBOT paid for by medical insurance or medicaid?
I have a 5 yr hold his has been diagnosed with ASD, SID and Speach Delays. We have the CT State Insurance for him. During our search for OT,(that includes a Sensory Diet, propriocieptive, tactile and many other sensory items) and SP for him, we came up with 2 that were about 20 minutes away but only did this in a group setting, the facility was not capable of handling everything he needed and I won’t go into how the equipment looked or how we were treated. Next places were about 40 minutes away and included everything. One took my insurance no questions asked and we are treated wonderfully and the only problem with the other place was did we carry a secondary insurance was asked, but willing to work with just the state insurance. So far I have not had any problems and my little guy loves this OT and SLP. I know this will get harder for us, but I work with my son every day. I am not saying everything will go this way for him, but for what he needs right now, we are getting what is needed for him.
I for one have alot of knowledge of ABA…I am a parent of two children who were dx with Autism ( 12 and 9 years ago) We had intensive ABA therapy…40 hours a week for each child…my oldest had it for 4 years…I thought he was doing GREAT until he had to be restrained in 1st grade for behaviors. My younger son made no skill progress with ABA after a year. I had a supposedly great program right from the Loovas institute…yet there are serious limitations to behaviorism. Listen folks…behaviorism conditions our children and what happens after a few years ( or a year in my younger child) is they accumlate alot of skill thinking but no relationship understanding. That is why ABA people will say Ohh No they need social groups and stories to help with social understanding. Yet with a ypical child, they learn social understanding BEFORE they even learn how to talk. Babies are excellent communicators, referencers ( think when a baby is crawling to a electric socket and looks back at you for *information*) They are thinking in the context of their experiences in the social world!! That is the strong foundation that our kids need to build upon..for both thinking and skills. When I saw that my younger son was not making any progress I investigated emerging treatments…and realized my older son who was by now, placed in a school for Autism because he was a hot mess…needed much more. Conditioning behaviors did not make him human…it made him a child who was controlling and still did not understand social cues. For both my children, we started RDI ( this was approximately 6 years ago)…best thing I ever did as a parent..I rescued my children!! Not only did I rescue my kids, but their school and I worked out where they would pay for RDI ( A HUGE SAVINGS BY THE WAY) instead…and My NOW 15 year old is back in his neighborhood school, a freshman in high school, friends, facebook, ( and he is going to play football next year! Yikes! All this to say…( as I could go on and on) is that parents need a CHOICE for what they believe is best for their kids!! RDI is evidenced based ( included in the NAS report)…is cost effective and I saved the school district 500,000.00 over 5 years….and My son is recovered! Something that would not have happened without addressing his developmental milestones. Im all for Insurance reform..but give parents a choice for what is best for their family. Not everyone wants to condition their children to perform certain beahviors…some of us want to create thinking children are flexible, problem solvers, and critical thinkers! When we create in our children mindfulness…not only do they blossum as thinkers but they always WANT to behave because they *get it*. Some states allow for choice…but most do not…that needs to change. We can do MORE with less by training the parents and empower them to be the first line of defense for their kids! YES I Agree with this article!! The laws are just the first phase..but lets make sure we use this law wisely..so that more families can utilize services!!!
Kathy Darrow
Thomas Charles Wood, advocating for more government intervention?