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A 2006 study from the Harvard School of Public Health estimated the cumulative lifetime cost of caring for a person with autism to be $3.2 million, and $35 billion for the annual cost of care for all people with autism. These figures include direct and indirect associated medical costs, yet the author of the study believes that these figures may actually be an underestimation due to the difficulties in gathering accurate data for other out-of-pocket expenses, including alternative therapies.

Now throw this into the mix.

New research suggests that the average household with children with autism not only spends thousands of dollars toward educational, behavioral and health care expenses each year, but also suffers from a lesser-known cost that hits them up front – a sizeable chunk of missed household income, perhaps as much as $6,200 annually.

The study, published in April's edition of Pediatrics, paints a more detailed financial picture of how expensive life can become for parents of children with an autism spectrum disorder.

"To our knowledge, this is the first U.S. study that examines this front half of the 'money in, money out' equation," said economist Guillermo Montes, Ph.D., the study's lead author and a senior researcher at the Children's Institute, a not-for-profit organization affiliated with the University of Rochester, where he also serves as a faculty member in the division of General Pediatrics. "To collect data on expenses is fairly straightforward– it's a survey report. But projecting earning potential and then stacking that against actual income requires complex statistical modeling."

[...]

"We were able to forecast within $80 of what these households, on average, were actually earning," Montes said.

It's not exactly shocking that insurance companies would balk at covering treatments typically associated with autism spectrum disorders. Some of the most common treatments are Applied Behavior Analysis (ABA), Occupational Therapy, Sensory Integration Therapy (frequently part of the Occupational Therapy domain), Speech Therapy and Physical Therapy, though with such a broad range of individual needs, these can vary significantly.

ABA

Behavior Analysis is the scientific study of behavior. Applied Behavior Analysis (ABA) is the application of the principles of learning and motivation from Behavior Analysis, and the procedures and technology derived from those principles, to the solution of problems of social significance. Many decades of research have validated treatments based on ABA.

[...]

ABA is an objective discipline. ABA focuses on the reliable measurement and objective
evaluation of observable behavior.

Reliable measurement requires that behaviors are defined objectively. Vague terms such as anger, depression, aggression or tantrums are redefined in observable and quantifiable terms, so their frequency, duration or other measurable properties can be directly recorded (Sulzer-Azaroff & Mayer, 1991). For example, a goal to reduce a child’s aggressive behavior might define “aggression” as: “attempts, episodes or occurrences (each separated by 10 seconds) of biting, scratching, pinching or pulling hair.” “Initiating social interaction with peers” might be defined as: “looking at classmate and verbalizing an appropriate greeting.”

ABA interventions require a demonstration of the events that are responsible for the occurrence, or non-occurrence, of behavior. ABA uses methods of analysis that yield convincing, reproducible, and conceptually sensible demonstrations of how to accomplish specific behavior changes (Baer & Risley, 1987). Moreover, these behaviors are evaluated within relevant settings such as schools, homes and the community. The use of single case experimental design to evaluate the effectiveness of individualized interventions is an essential component of programs based upon ABA methodologies...

Occupational Therapy

Occupational Therapy can benefit a person with autism by attempting to improve the quality of life for the individual. The aim is to maintain, improve, or introduce skills that allow an individual to participate as independently as possible in meaningful life activities. Coping skills, fine motor skills, play skills, self help skills, and socialization are all targeted areas to be addressed.

Through occupational therapy methods, a person with autism can be aided both at home and within the school setting by teaching activities including dressing, feeding, toilet training, grooming, social skills, fine motor and visual skills that assist in writing and scissor use, gross motor coordination to help the individual ride a bike or walk properly, and visual perceptual skills needed for reading and writing.

Sensory Integration Therapy

One of the main difficulties autistic children face is how they perceive the environment. Oftentimes, their sensory impulses are contradictory to what is expected by society. Autistic children often have severe difficulty managing their sensory perceptions and a host of seemingly self-destructive behaviors or actions that are perceived to be senseless is the result. Autistic people sometimes cannot perceive their own physicality and must resort to these behaviors to “feel” something. For instance, some autistic children may bang their head against a wall or spin around in circles. Others have been known to self harm or crash into objects. These behaviors are the direct result of sensory integration impairment.

The process of sensory integration therapy seeks to mitigate these behaviors by teaching how to incorporate information gathered through the senses: smell, taste, touch, hearing, and vision, and combine these stimuli with what is already know to produce proper responses. As with levels of severity of autism, there are also different levels in which autistic children experience sensory integration dysfunction (SID). These levels range from mild to severe and can either manifest in a lack of sensitivity to the environment or a constant state of over-sensitivity.

Sensory integration therapy seeks to teach the nervous system how to process stimuli in a normalized fashion. A. Jean Ayers, Ph.D., was the first to research the process known as sensory integration therapy. She built the foundation of the therapy that has been instrumental in helping autistic children all over the world. Using a variety of sensory and motor exercises for the central nervous system it is actually possible to teach the brain how to accomplish this. Typically, an occupational therapist or physical therapist is the professional that practices sensory integration therapy.

Using various techniques it is possible to improve concentration, listening skills, physical balance, motor functioning, and impulse control in autistic children. While it is not successful in 100% of cases, sensory integration therapy has been shown to be a valuable tool for helping those with autism cope with their environment and lead a better, more adjusted life. Each autistic child has different symptoms and it is necessary to devise a plan for each individual when initiating sensory integration therapy.

Speech Therapy

What are the common speech and communication problems with autism?
Autism can affect speech, language development, and social communication in many ways.

Speech problems. A person with autism may:

  • Not talk at all
  • Utter grunts, cries, shrieks, or throaty, harsh sounds
  • Hum or talk in a musical way
  • Babble with word-like sounds
  • Use foreign-sounding "words" or robotic-like speech
  • Parrot or often repeat what another person says (called echolalia
  • Use the right phrases and sentences, but with an unexpressive tone of voice

About one out of three people with autism has trouble producing speech sounds to effectively communicate with others. Their language is simply too hard to understand.

Communication problems. A person with autism may have one or more of these communication challenges:

  • Trouble with conversational skills, which includes eye contact and gestures
  • Trouble understanding the meaning of words outside the context where they were learned
  • Memorization of things heard without knowing what's been said
  • Reliance on echolalia as the main way to communicate
  • Little understanding of the meaning of words or symbols
  • Lack of creative language

Physical Therapy

Autism is a pervasive developmental disorder. This means that most people on the autism spectrum have delays, differences or disorders in many areas -- including gross and fine motor skills. Children on the spectrum may have low muscle tone, or have a tough time with coordination and sports. These issues can interfere with basic day-to-day functioning -- and they're almost certain to interfere with social and physical development.

[...]

Physical therapists may work with very young children on basic motor skills such as sitting, rolling, standing and playing. They may also work with parents to teach them some techniques for helping their child build muscle strength, coordination and skills.
As children grow older, physical therapists are more likely to come to a child's preschool or school. There, they may work on more sophisticated skills such as skipping, kicking, throwing and catching. These skills are not only important for physical development, but also for social engagement in sports, recess and general play.

In school settings, physical therapists may pull children out to work with them one-on-one, or "push in" to typical school settings such as gym class to support children in real-life situations. It's not unusual for a physical therapist to create groups including typical and autistic children to work on the social aspects of physical skills. Physical therapists may also work with special education teachers and aides, gym teachers and parents to provide tools for building social/physical skills.

Simply put, autism can be a financial hardship for many families, not even figuring the emotional toll into the equation, including an astronomical divorce rate among parents of autistic children, though that's a topic for a future diary.

So where does that put us in relation to the current lay of the land?

Does the term pre-existing condition mean ring a bell? In the health insurance industry it doesn't just ring bells, it sets off alarms. This is one of the reasons the Autism Society of America has thrown its weight fully behind President Obama.

What health-care reform can do, and what it means for the autism community, is illustrated most easily by the all-too real scenario of two families looking to buy health insurance for their children who are affected by autism. One family, whose son Mauricio, a 24-year-old young man with an autism diagnosis, diligently called several private insurance providers and asked for premium quotes for a policy, and each and every company explained that they will not sell a policy for someone who has an autism diagnosis. Another family, whose 7-year-old daughter, Angela, has a diagnosis of PDD-NOS, made the same calls to a number of insurance companies as well after Angela’s dad got a new job with a different company. They too were told the same old story—no coverage for Angela due to her “pre-existing condition,” autism.

“This is just not right,” said Jeff Sell, Autism Society Vice President of Advocacy and Public Policy. “Not only are these families being unfairly refused coverage for treatment of autism, but the companies are also refusing to sell coverage so these young people can see a doctor if they get strep throat, break a bone, develop a stomach ulcer, require intensive behavioral interventions or otherwise simply need access to prescribed medical care. In the future, with meaningful health-care reform, these families will be able to buy health coverage because insurance companies will no longer be able to exclude anyone just because that person has autism, or any other pre-existing condition.”

The White House has two Web sites to help explain the realities of health-care reform: http://www.healthreform.gov/ and www.whitehouse.gov/realitycheck. Both provide excellent background information and myth-busting. Further, Representative Henry Waxman (D-CA) has published a “line-by-line” review of claims and realities regarding HR 3200. That review can be found on his Web site. Many non-governmental organizations have also created Web sites and documents that help provide clarity on the debate. The independent, nonpartisan Web sites http://www.politifact.com/ and http://www.factcheck.org/ have investigated a number of claims and provide true-or-false evaluations of many current health-care reform proposals.

Here are the states that currently have autism insurance reform laws, or active bills, h/t to AutismVotes.org.

States with autism insurance reform laws
Arizona
Colorado
Connecticut
Florida
Illinois
Indiana
Louisiana
Montana
Nevada
New Jersey
New Mexico
Pennsylvania
South Carolina
Texas
Wisconsin

States with active autism insurance reform bills
Maine
Massachusetts
Michigan
New Hampshire
New York
Ohio

Anything short of 50 on this list is unacceptable and the strength of the laws vary from state to state.

You know a person with an autism spectrum disorder. Show them some love, support real healthcare reform.

Originally posted to doug snodgrass on Fri Sep 18, 2009 at 09:34 PM PDT.

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Comment Preferences

  •  insurance companies are just obscene (8+ / 0-)

    when my doc prescribed percodan for incredibly painful periods, ha, the insurance company said preexisting condition.

    so, when did my prexisting condition start? when i was born?

    Earth provides enough to satisfy every man's need, but not every man's greed. Mohandas K. Gandhi

    by Patriot Daily News Clearinghouse on Fri Sep 18, 2009 at 10:24:14 PM PDT

  •  One reason I love this site. Every day ... (7+ / 0-)

    ...I learn something I never even thought about previously. Thanks for this lesson, sir.

    Tip'd, Rec'd, Appreciat'd.

    Science is just a theory.

    by Meteor Blades on Fri Sep 18, 2009 at 10:26:42 PM PDT

  •  Yes, I can tell you first hand that (2+ / 0-)
    Recommended by:
    chigh, dsnodgrass

    it is expensive to try to address the needs of a child with autism.  And the reason I have not gone back to work is because my child has ASD.

    But it is unfortunate that your diary focuses on ABA to the exclusion of other therapeutic modalities (sensory integration, OT, etc. are not competing educational/developmental modalities, as much as they are entirely different therapeutic areas).  

    ABA is a very limited, narrow form of therapy and I wish you would not highlight it so much.  ABA has really gotten a chokehold on a lot of states and school districts.  There are HUGE problems with it.  This is probably not the place to go into the details, but let me just say that ABA always touts itself as the only empirically-demonstrated, objective therapy and convinces states to reimburse ABA providers to the exclusion of others on that basis.  ABA is pretty much entirely compliance-based.  Kids who received ABA DO change their behaviors, but those changes nearly always continue to be contingent on the environment not changing.  Kids don't really learn meaningfully, in my opinion, and find it difficult or impossible to generalize the "skills" they learn in ABA outside the therapeutic context.  A lot of ABA is essentially like dog-training, and it overlooks a great deal of potential that adherents to ABA do not really believe these children have.  Now, ABA is very effective for some situations and for some children, but it is now essentially forced on all kids on the spectrum.  And since more and more developmental problems are being labeled as "on the spectrum," this means that even kids who have enormous potential to develop in a far more natural, connected and related way are having a truncating and even stifling methology imposed on them.  ABA is NOT the approach of choice for every kid on the spectrum, by any means.  

    Would you consider linking to some other well-established therapies that are relationship-based, rather than compliance-based.  For example, D.I.R./Floortime:

    The Developmental, Individual Difference, Relationship-based (DIR®/Floortime™) Model is a framework that helps clinicians, parents and educators conduct a comprehensive assessment and develop an intervention program tailored to the unique challenges and strengths of children with Autism Spectrum Disorders (ASD) and other developmental challenges. The objectives of the DIR®/Floortime™ Model are to build healthy foundations for social, emotional, and intellectual capacities rather than focusing on skills and isolated behaviors.

    This is the ICDL website.

    And there IS research supporting this modality.

    The GNOP: We take the bi out of bipartisanship

    by Mother of Zeus on Fri Sep 18, 2009 at 11:04:04 PM PDT

    •  Considered, Mother of Zeus (2+ / 0-)
      Recommended by:
      chigh, Mother of Zeus

      but first I'd like to mention that your need to remain at home with your child is a commonly-shared experience among parents of a child with ASD. The work and level of stress are much more intense than anything a person generally experiences in a conventional 8-5. It's a noble pursuit, you have my admiration and empathy.

      Yes, Floortime is something that I am aware but my reason for not including it in this list was no reflection on how I feel about its effectiveness.

      In my autism advocacy I come into contact with hundreds of families each year who are affected by autism, and I chose to list those therapies that are most commonly pursued. Floortime isn't as commonly used as an independently-sought, paid therapy at this time, though this may change in the near future.

      I didn't feel that ABA was emphasized more heavily in this diary than the others that I listed, and I am aware that there is a bit of controversy attached to it. It's not an endorsement of the therapy, simply a presentation of a common expense.

      However, I do appreciate that you took the time to add the information about Floortime as it deserves a place in this conversation.

  •  My friend's daughter.... (5+ / 0-)

    ...just graduated college with a degree in special ed and her specialty is autism.  She did a free internship this summer and of course can't find a job.  The internship place has her working part time and as they get more students they want to hire her full-time.  They are private, dependent on parents who can pay and other charitable funding.  

    What is wrong with this country that we can find billions to send kids to war and not employ a young woman who wants to help autistic children?  She's lucky -- she can live with her parents.  God knows what she's doing about health insurance (she has some "pre-existing conditions")

  •  The costs include divorce (4+ / 0-)
    Recommended by:
    Fabian, dsnodgrass, bushondrugs, NuttyProf

    Unfortunately, many marriages fail under the exhaustion and stress of raising a child with autism.  The primary caregiver is left to struggle with trying to maintain a job while coping with frequent emergencies, home-based therapies, doctor's appointments, school meetings, and very little sleep.  And then the job is lost, COBRA payments can't be made, and another family loses insurance.

  •  Lupus, MS, EDS, ALS - the list goes on (3+ / 0-)

    Autism isn't the only ailment that attacks the wallet. Right now, we have a large portion of the families in the US who have medically-induced poverty due to the stubbornness of family members to stick by their loved one in time of chronic illness.

    We are invisible. We have no lobbyists. We are legion. We need to find one another, and create a real lobbying group.

    From a statistical point of view, I can estimate that every person in the US knows of a person who is failing economically from a chronic ailment. We need to form the biggest lobbying group that Congress has ever seen.

  •  I could use the cash. (3+ / 0-)

    Right now I've got to get on my soapbox and write a snappy letter to my ASD son's teachers.

    I get a note that he was throwing mulch at recess.  They told him "No mulch!" repeatedly but he laughed and kept throwing mulch.

    Excuzez moi!
    My son understands spoken language perfectly well.  He doesn't always respond in the expected ways - eye contact, verbal response - but he hears just fine and understands.  The teacher was saying "No mulch!" as if two words are all he could handle.  She might be a sub, but that is hardly an excuse.  Any other student would probably have gotten a quick refresher on proper playground behavior - in complete sentences.

    Proud member of the Cult of Issues and Substance!

    by Fabian on Sat Sep 19, 2009 at 01:58:49 AM PDT

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