Time can be the enemy for families waiting for a diagnosis for children they suspect may be on the autism spectrum. And after a child is diagnosed, the ability to pay for and access necessary therapies is sometimes an impossible roadblock.
Researchers from the Centers for Disease Control and Prevention (CDC) recently announced that an estimated 2.24
percent of children in the United States may have autism. This is a
nearly 80 percent increase from 2011 to 2013, when it was estimated that
1.25 percent of children in the U.S. were diagnosed with autism.
Before diagnosis, families can experience waitlists as long as 12
months. After diagnosis, families often wait a few months to more than a
year before starting treatment — that is, if they can afford treatment
A growing disparity exists between families that are able to access
and pay for services for their children with autism and those that
cannot. Advocacy for early identification and intervention matters, but
not all families can afford to follow through on what is recommended or
do so quickly.
This places a greater burden on families, hospitals,
school systems and communities.
In a new study in Autism,
researchers from the CDC and other organizations found that 13 percent
of children previously diagnosed with autism lost the diagnosis because
of incorrect diagnoses, developmental maturation and treatment.
These results are not surprising, and they reflect what I see in
clinics in the Chicago area. On a typical day, I may see one family able
to access up to 30 hours of direct services for their child with autism
through private insurance or out-of-pocket expense, while another
family cannot access private therapy because their insurance is not
accepted and the out-of-pocket expense is too great. The out-of-pocket
cost for one of hour of therapy for a child with autism can range from
$100 per session to over $150, which can add up quickly.
The Affordable Care Act
expanded coverage for autism, providing an important option for
families to purchase plans in the marketplace. Unfortunately, not all
families are able to afford the plans that cover more extensive
therapies. The plans they are able to afford may not cover their
preferred providers. To take away this option would be even more
devastating for children and families and possibly leave them without
any therapy for their child.
Compared with other children with special health care needs, children
with autism face more serious gaps in insurance coverage, and many
that coverage is inadequate. In Illinois, public insurance does not
cover applied behavior analysis therapy, which can be very beneficial
for children with autism.
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