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Autism Costs Vary Sharply State To State


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The cost of caring for a child with autism differs widely simply depending on where a family lives, new research suggests.

In a study looking at more than 2,000 kids with the developmental disorder, researchers found that state policy — specifically whether or not insurers were required to cover autism therapy — tremendously altered the financial situation for their families.

“We found that families who live in states that have passed parity legislation spent considerably less for their children with autism than families living in states without such legislation,” said Susan Parish, a professor of disability policy at Brandeis University who led the study.

Parish and her colleagues used data from the National Survey of Children with Special Health Care Needs to compare the experiences of families residing in states with and without autism insurance requirements.

Of those living in Massachusetts, Missouri and Utah — where there was no coverage requirement when the survey was conducted in 2005 — 60 percent said they spent more than $500 a year on services for their child with autism.

At the same time, in Maine where an insurance mandate was already in place, just 27 percent of families reported spending that much, according to the study published recently in the journal Intellectual and Developmental Disabilities.

Even when researchers controlled for factors like the severity of the child’s disability and family income, costs continued to be significantly lower if families lived in a state with an insurance requirement, the study found.

Currently, 31 states have laws requiring insurers to cover autism treatment, according to Autism Speaks.

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Comments (8 Responses)

  1. Mark L. Olson says:

    The study was done in 2005? This is 7 year old data (and pre-recession) and completely useless.

  2. Marie Maguire says:

    Where did you find the date 2005? Was it republished in June 2012?

  3. Sharon says:

    @Marie: “when the survey was conducted in 2005”
    What I want to know is where did they come up with $500 Most families spend $40,000 or more.

  4. Sonja Luchini says:

    As others have pointed out, this is a very old study and the $500 figure is laughable. We’ve paid that much in a week for therapy at one point when insurance companies would not assist.

    I live in Los Angeles and as a city with many resources, there tends to be more children with disabilities whose families have moved here for better services. As Los Angeles Unified School District is the beneficiary of the children who come from all over the country for the specialized services offered:
    Children’s Hospital Los Angeles Newborn and Critical Care Unit (from their website description):
    “The most challenging neonatal disease conditions are transported to us for care from neonatal intensive care units throughout the greater Los Angeles metropolitan area, Southern California and other states such as Nevada, Arizona and Hawaii, by ambulance, helicopter and fixed-wing aircraft. Examples of the complex cases transported to us include:
    • Medical and surgical conditions associated with complications of extreme prematurity
    • Persistent pulmonary hypertension of the newborn requiring complex cardiopulmonary management and potentially extracorporeal membrane oxygenation (ECMO)
    • Preterm and term neonates with congenital heart disease often having multiple other congenital anomalies
    • A host of general pediatric surgical and surgical subspecialty conditions affecting the newborn
    • Infants with very rare diseases”

    UCLA SEMEL Institute and Resnick Neuropsychiatric Hospital – with several programs that help identify children (descriptions from their webpages):
    Center for Autism Research and Treatment: “UCLA’s Autism Evaluation Clinic provides a specialized, high-level of multi-disciplinary expertise in its approach to this difficult and poorly understood disorder.
    Developmental Disabilities Clinic: “This clinic provides expert assessment and treatment for mental retardation, autism, cerebral palsy, co-existing psychiatric and developmental disorders, and psychosocial or educational aspects of medical conditions such as diabetes, renal disease, cancer, asthma, and other chronic illnesses.”
    Early Childhood Partial Hospitalization Program (ECPHP): “at the Resnick Neuropsychiatric Hospital at UCLA is a short-term integrated day treatment program for young children with autism, developmental disabilities, and behavior disorders.”
    Inpatient Child and Adolescent Services: “Hospitalization is provided for children and adolescents who require intensive diagnostic evaluation or treatment in an inpatient setting due to behaviors that cannot be managed at home, in the school, or in the community, or who are a potential danger to themselves or others.” (As these students exit this program, they return or enroll in our LAUSD schools)

    Special High School for Foster Youth with an Eligibility of Emotional Disturbance: LAUSD has a unique setting for Foster Youth in need of intensive intervention that provides wrap-around services and supports.

    This is one DISTRICT (granted, the second largest in the nation and largest in California), but shows that when families move to an area for services, they tend to stay and enroll their children in the neighborhood schools to be near the hospitals and agencies that care for the intensive needs of these students.

    Insurance is one of the factors, but there are others as well. Our insurance company refused to cover any Autism-related therapies for many years when he was first diagnosed. Families sued and won. But with budget woes, we are again being questioned for every single submission. Just recently we were questioned about a quarterly visit to the psychiatrist who has been dispensing medication for over 15 years. Now the insurance company was asking for “doctor’s notes”. I said it’s the same issue, with the same doctor, with the same results and if only now they are deciding to “question” the needed service than I’d be happy to send the last 15 years of notes to them…or they could process the claim as they have in the past.

    My argument is always that these kids can’t get “talked out of” autism by lying on a psychiatrist’s couch. It’s an organic brain disorder and will not go away or get “cured”. The needs are ongoing and probably for a lifetime, which galls them to no end, I’m sure.

    Insurance companies have probably been very unhappy with the scientific progress made by our local institutions in finding ways to help our children. It just means more expense for them, but it means the difference between having a satisfying and productive life as opposed to institutionalization – a cost that would be more astronomical in the long run.

    Bottom line: If a service is available that can help a child, the service should be provided. Period.

  5. Linda says:

    We live in a parity state, CA, which just passed another law regarding paying for autism services and we spend over $6000 a year for services and medications that aren’t covered. I would be thrilled to pay yearly what we currently pay monthly!

  6. gilbert handal says:

    I have difficulty believing a study as this gets published, the data is old, incomplete and and does not make anty sense, what is worse contributes to a distorted view of the real costs of this very complex condition(s) in children and does a great disservice to the need to develop programs to support this children and their families with real evidence based interventions (ABA and psycho-educational approaches) that ought to be integrated, addressing the need and specific approach for every child and family, I am also surprised of this “article”being selected in an AAP publication.

  7. Sonja Luchini says:

    What’s annoying about Disability Scoop articles is the citing of reports and studies that the average mom cannot access. I’ve written to some of these online journals asking if they would provide “grants” or “stipend fees” to CACs and other unfunded family support agencies and have not heard back yet. It’s difficult to make an informed comment most of the time due to the inaccessibility of the cited material.

    It would be nice to have the actual studies and reports shared as well.

  8. hdemic says:

    500 a year. How about 800 a month just for working weekends. Yes I am single and no I don’t get help. Mandate what????
    mom of special needs in west mich

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