House State Affairs rejects bill to extend insurance coverage for treatment of Autism. Instead of allowing people to treat under their insurance now, taxpayers on the hook for more later. A lot more.

Pat Powers

Yesterday, the House State Affairs Committee rejected HB 1236, a measure to revise certain provisions regarding health insurance coverage.

If you’ve been following the news, as this and another measure have been featured on most network news channels, the bill was to reverse a decision by state insurers to cease coverage for Applied Behavior Analysis (ABA) Therapy to treat children with Autism Spectrum Disorders.

It’s a battle that started several years ago in group plans, that culminated with a negotiated agreement for some very minimal extension coverages, and to set up a framework for the licensure of the therapists. This years’ fight was to attempt to extend the protections to all insurance plans. Naturally, the insurance carriers trotted out their same arguments against it, and the bill met the same fate as when the battle was first started several years back.

And like the first time the battle was fought, the mechanics of the regulatory structure for coverage, the laws and the “why’s” behind the measure are incredibly complex.  Every time parents hope for a solution from lawmakers, it ends up going back to the drawing board for more education of lawmakers and elected officials as to why extending the coverage is the only solution that makes sense.

One of the arguments made by insurers is that by continuing the coverage they had provided would possibly raise insurance premiums some unknown figure between .30 to 2.50 a month to provide therapy that – in some cases – can eliminate nearly all limiting factors of Autism Spectrum Disorder. The therapy that people are seeking the ability to use their insurance coverage for over the course of a few years can allow these children who would otherwise qualify as disabled under state and federal law to be able to be educated, and to live, work, pay taxes, and contribute to society as you or I.

Now let you give you another figure on the other side of it.

As a parent of a child with Autism, my daughter is a bit of a tougher case. She requires a specialized program in her school environment right now, due to the severity of her disability under the laws which mandate that she’s provided a free and appropriate public education. She’ll probably always require the community supports that people with a disability are entitled to under state and federal law.

For a school district, depending on the level of their disability, kids with Autism can be some of the most challenging and expensive students that they work with. I know, as my daughter is one of them.

As a student, my daughter costs the Brookings School District somewhere in the neighborhood of $10,000-12,000 a month. And that’s every month, year-round, as her disability requires summer services.  For one student, she’s over $100,000 a year. And she’s not the only student in the Brookings School District with Autism, as her program has other kids who attend.

And that’s just ONE school district.

The expense for providing services to children with disabilities who aren’t successful in a regular classroom environment can be considered one factor in high-dollar special education budgets, as the state is hitting crisis mode with the extraordinary cost fund.

That additional $100,000+ my daughter’s education costs are the expenses to taxpayers while she’s in school. As a person with a disability, we haven’t even ventured a guess as to what her lifetime expenses will be in serving her support needs in an independent apartment, if she’s ever able to live independently. Over her lifetime, it will total in the millions to taxpayers through services rendered through DHS and DSS.

And again, she’s not the only one with Autism in the state.

These issues don’t exist on their own silos. Legislators can help address a facet of the problems we have with special education costs by helping parents who want to help their kids. Steps today can help with future expenses in the budget for DHS or DSS in the future.

These are real and tremendous costs to South Dakota taxpayers. When lawmakers resisted a request from families begging for the ability to access their own insurance coverage to pay for proven therapies that turn many kids who would be an expense to taxpayers into contributing taxpayers themselves, it was a missed opportunity.

It’s what our grandmothers spoke about when they used the phrase “an ounce of prevention..”

With a little initiative, lawmakers still have the opportunity to save millions of taxpayer dollars in the long run. I can assure you that the parents who testified yesterday are very interested in doing so and they will continue to fight for a chance for their kids to have a life just like you or I.

We don’t need a study, as we’ve already done that. We don’t need to prove that ABA therapy works, as that’s proved by studies and evidence. Parents just need the chance that they’re asking for.

Legislators still have time and the opportunity to make it right this session, if they choose to take it.

32 thoughts on “House State Affairs rejects bill to extend insurance coverage for treatment of Autism. Instead of allowing people to treat under their insurance now, taxpayers on the hook for more later. A lot more.”

  1. Interesting how you don’t side with your Republican right-wing cronies, because you have a personal story to tell. I would hope this opens your eyes to the many other potential viewpoints on these types of important issues.
    You want these coverages mandated…a very un-Republican take. But your own personal story carries much weight. And, I, a Republican also, agree, that insurers shouldn’t be able to bow out. Close the loophole.

    1. The coverage is already mandated, this is to close the loophole. And it really should be covered under the mental health parity act, but we’re trying to get it done legislatively, as opposed to legally.

      And actually, my “right wing cronies” were there on the bill. Brock Greenfield testified in favor of it, and Sue Peterson had sponsored another measure to accomplish it. There’s nothing wrong with letting people who will willingly pay a little now, to prevent massive taxpayer cost in the future.

  2. This is the fundamental problem with conservatives. Most of us don’t have the courage of our convictions or the willingness to stand by our principles when it costs us personally.

    1. Someone needs to tell them that they can’t buy their way into heaven and they will have to explain why it was moral to deny care for children….because money. Their morals end at their checkbook.

  3. I think you just provided the argument for universal healthcare. We spend more money than any country because we don’t understand how being proactive will save us much more money in the long run. Too bad though, Pat, the repubs would rather your child die than be a burden on taxpayers. It’s not our problem to give your kid the medical treatment he/she needs. Grab your child by their boot straps.

  4. Thank you for this post. I was at the committee meeting yesterday. It was heartbreaking to watch my daughter Lindsey Janklow Brazendale testify, along with the other mothers of children with autism. These children are truly a gift from God, who deserve their elected officials to put their quality of life before the special interests of insurance companies.
    Insurance companies need to be responsible for autism therapy. The arguments being pushed by the insurance division regarding cost, are not even supported by their own studies. We are not going to stop fighting for what is right for the children of South Dakota. There is a push for the insurance bill to be smoked out so that it can be debated on the floor. Please contact your legislators to consider allowing this bill to be considered by the full house for approval.

    1. While I don’t pretend to grasp all the complexities associated with Autism, I’m grateful to both Pat & Mary. Personally, I find their caring, first-hard perspectives instructive. For what it’s worth, I learned, after spending time volunteered with children on the spectrum, that proper treatment is vital and quite costly. No, I can’t offer a pithy, perfect policy that solves every problem, but when I read: “the insurance carriers trotted out their same arguments against it, and the bill met the same fate as when the battle started several years back” I wasn’t surprised. Most of America’s national health insurance companies are [expletives deleted]. Since they rammed the ACA through congress in 2010, wealthy mega corporations & their greedy execs have reaped *obscene* profits. Affordable care? What a load of bull.

      1. In theory, getting everyone insured should lower costs….then repubs and the insurance lobbyists gutted it. As long as healthcare is run to turn a profit, all Americans will suffer.

        1. I trust we can agree that the crafty health insurance lobbyists who wrote the ACA’s final version sought to maximize industry profits and that, under this duplicitous 2010 law, millions of working Americans suffer. Republicans could have repealed the ACA (from 2016-2018) but failed to deliver on that campaign pledge. Now, working families’ health insurance premiums have tripled and, in many cases, quadrupled. Deductibles climb each year. Coverage exclusions grow. Meanwhile, mega insurance companies get richer & plutocrat NY executives cash out their stock options, buying grander yachts, more Hamptons beach houses & vaster Connecticut mansions. Obscene.

          1. Define suffering? Families are not going bankrupt or being denied care at the rates before. Which is more suffering? A middle class family who may have less expendable income due to rising insurance costs, or a family going broke and on welfare because they had a child who is considered to have a pre-existing condition? The suffering you say that is happening now is no where near what it was before.

            1. I think you’re saying: not *everyone* has suffered under the new regime. That’s a fair point. Although some still lack coverage, the number of uninsured Americans dropped by 12 million under Obamacare. Mr. Obama cited this figure as the law’s primary achievement. Few dispute that the majority (though perhaps not all) of those 12 million benefitted. Greater than 80% of the newly insured = economically-disadvantaged folks. Many others were those w/ expensive medical conditions — people who couldn’t afford coverage. As many now receive care, we might reasonably assume they suffer less and that their quality of life has improved. The ACA deserves credit for helping some Americans.

          2. One could argue they simply spread the suffering around instead of forcing the combined suffering onto a single family.

  5. I think we need more information about the therapy and how it is delivered.
    The Argus Leader has an article that said the therapy can take 40 hours per week.
    Is this being done on an outpatient basis or are the children hospitalized? Does a licensed health care provider come to the family home for 8 hours a day? Would it be more efficient to have the child admitted to a facility serving multiple children? Exactly who is providing the therapy?

    1. Anne – That was all figured out starting in 2014, and the parties have already been to the table on it. (https://www.psychologytoday.com/us/therapy-types/applied-behavior-analysis if you want an overview of what it is).

      The only thing being discussed now is whether the previously passed mandate should be extended to individual market insurance plans.

      My point is that by allowing people to use their own insurance plans, it will allow schools and the state to save up to a few million in taxpayer dollars (over time) per child.

      1. Pat, the question is not whether the therapy is effective and valuable. It’s where the funding should come from.
        I read your link.
        So the therapists have no medical training. They are not qualified to administer medications, manage catheters, tube feedings or tracheostomies.
        They work in non clinical settings like homes and schools, not hospitals or clinics, although there’s no reason they can’t. The patients are not in hospitals or clinics. They aren’t even patients, they are clients. And they go to school every day.
        The therapists coordinate with teachers and parents, not nurses, certified nursing assistants or patient care technicians. They aren’t medical providers, they are educators, and autism is defined under Special Education funding as a Level IV learning disorder.

        So why do you think funding should be subject to the variations & limitations of parental medical insurance? Why should the treatment depend on the quality of the parents’ medical plan? We know Medicaid coverage is crap; no therapist will want those clients. Other parents have such high annual deductibles that they might be tempted to forgo a year or two of treatment.

        Why aren’t the costs covered by Special Ed? Why do parents have to worry if their health insurance will cover all the costs, or hit a cap on benefits?

        1. Anne,
          What is your medical background? May I ask. I have an MSN in Nursing Education. What do you think defines medical treatment? Do you think or can prove that all medical necessities require invasive procedures such as IVs, trachs, etc.? Where do you get the difference between clients and patients? Please explain. Let me update you on medical reference. I have worked in MEDICAL setting that we referred to clients. What do you think is home health? How do you know the difference in medical settings? Just because some services are in the home setting they are not medical? I think before you make these comments you need a medical experience. I have worked in many medical settings, which individuals receiving medical care were called “clients” and “were cared for in their home”. So should insurance companies be allowed to stop paying for in home care. Should insurance companies and medicare be relieved of covering “residents” in a nursing home because the aides might help with toileting and showers? Before you point the finger at what YOU think is medical vs non-medical, you should do your research.
          Will it be a medical necessity when a person with Autism can no longer care for themselves and need in home care? Because realistically this will happen. You are fighting a bill that will make insurance companies have to pay for ABA therapy. Insurance companies me and my Husband pay for and have right too for service. My son has medical necessity proven by Avera Health Insurance that in turn refused to cover ABA.
          Next question, what do you consider is medical treatment? What do you consider is a medical provider? Is a physiologist not medical? Is mental health and behavioral health not important? My son’s clinical supervisor who works 1:1 with him in the ABA setting is a clinical physiologist who is ABA certified. How do they differ from a PT OT speech etc?
          Also, your discussion on what doesn’t count as medical, would have any nurse feel like you just downplayed their profession. You have no idea what nurses do on a daily basis for their patients. I will patiently wait for your response

          1. I have a BA in psychology with a minor in Child Development from UMass, an AA in nursing from DWU, I am retired now but I was an RN, CCRN, with additional specialty training in pediatrics intensive care. I was a pediatric resource nurse at Brookings Hospital.

  6. Lol.. ohhh Kari.. I am anticipating Annes response. Because she made a very valid point in regards to the definition of Autism in accordance with Special Education. And shes right. Shes asking the right questions. All you did was sound Holier than thou.. do you think than, according to your own words, that any “learning disorder” should be covered? Where’s the line on what needs pschyological treatment? I think, that if this particlar path of trying to get insurance companies to cover this isnt working, than maybe people need to think outside the box. Anne was merely making that observation. Get off your high “MSN” horse.

    1. ” Anonymous “,

      The CDC defines Autism as a ‘developmental disability ‘. So what is your “limits” on developmental disability? It is a genetic developmental disability. As in the child was born with this disability. Should insurance not cover someone who needs assistance for being deaf, fetal alcohol syndrome, down syndrome? Those are developmental disabilities. Or should child be denied medication to help with hyperactivity or concentration that has ADHD because it affects their learning? Should schools and tax payers pay for these items as well?

  7. You still missed the point. Your getting all riled up and its not doing anything to help your cause. When do parents start noticing their child may be autistic may I ask?

    1. I think she got the point just fine. It seems like Anne is trying to down play the condition and reinforce that by degrading the person providing the treatment.

    2. No. I’m a parent of a child who has a medical diagnosis confirmed by a medical provider that is Autism Spectrum disorder . We knew at 12 months. No educational program they did not step in until 18 months. We were also evaluated by a medical doctor who specializes in behavioral and a nurse practitioner. So I don’t know how much more medical proof you need.

    3. Parents start noticing within a few months of birth, when their child does not make eye contact or try to get their attention by cooing and babbling. The child can’t wait until he starts school. But he can’t wait until the parents get can save the money for copays and deductibles either. And when your deductible is near the family plan national average of $7983/year quoted by eHealthInsurance, that can be a long wait. The funding should come under Special Ed.

    1. If your child was diagnosed with ADHD, blindness, deafness or developmental delay would his education be covered by medical insurance?

      No. Special Education is not covered by medical insurance. I

  9. Anne,
    Should medical insurance cover occupational therapy, physical therapy, or speech therapy? Should medical insurance cover mental health or behavioral?
    Now should special education cover toileting, potty training, safety, behaviors such as a child banging their head against the wall over and over again? Do you want me to go into the list of items ABA has done for my son and many other? Learning to dress, fine motor skill coordination, elopement prevention, potty training when I couldn’t one as a parent. Tantrum behaviors. Violent behaviors, behaviors schools cannot handle and request behavioral specialists. So should lifescape in sioux falls not be funded by insurance? Because they do the exact same thing, ABA PT OT speech. You can get a doctors prescription for all of these.
    Do you know drowning is one of the number one causes of deaths in children with autism. Which is elopement. ABA helps with that behavior. It’s not special education. Its behavior therapy. If ABA is considered not medical but educational, so should OT. Which Occupational therapy is not.
    I think for someone with your training you should be able to look into this service and understand behavior therapy vs education. Have you ever cared for an autistic child?

    1. Anne,
      I think the problem is you do not know what ABA is whatsoever.
      It’s not just education related.
      For example a child with sensory problems may not be able to do school work, go into crowds, get dressed, because the world physically hurts them. Their sensory neurons are literally bouncing around uncontrollably. With a sensory diet such as swinging a specially designed swing, the can sit down for 20 mins and learn because there sensory need has been filled.
      I know it’s the assumption a pill will fix everything, but it does not. I invite you to visit to visit an ABA facility. Watch a child do 1:1 intensive therapy for 8 hours a day as my son has since he was 3 years old.
      When I referred to down syndrome, deafness, and ADHD. What I meant was should we pay the medical necessities they require to live life or go to school to learn such as medications? You have no idea what autism is if you think it’s just a learning disability.

    2. I just noticed you asked about medical insurance covering speech therapy.
      When my daughter had speech therapy, it was not covered by medical insurance. Not a cent. Our insurance didn’t pay for orthodontia, either.

      You also asked about physical therapy.
      I am a frequent flier at our local PT dept. I am on Medicare. Medicare covers it- at 10%.
      That’s all Medicare pays for PT, 10%. Not even enough to pay the therapist minimum wage.

      What I am reading here is parents of autistic kids who are fortunate enough to have good medical insurance AND the money to cover the copays and deductibles, taking the attitude “I got mine, screw everybody else.”
      Big of you.

  10. Kari may have an MSN but unaware of how medical insurance works.
    There are variations and limitations which have nothing to do with what the patient needs. There are prohibitive copays and deductibles.
    And then there is “assignment,” a reimbursement rate which, in the case of government insurance like Medicaid and Medicare, is often so ridiculously inadequate that the people who use it get crumbs. They don’t realize it, but people with more money to spend are provided more and better options.

    And when it comes to neuro and psych disorders, payments and treatments come to an abrupt halt on either an arbitrary end date or when progress stalls. In the case of inpatient care, the family gets a sudden, unexpected phone call to come pick him up.

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