Re: Understanding My Policy

Thanks for your patience!  Nothing in this Forum goes unheard.  But, our families (and the time commitments of the jobs that support us) must come first.  For many, there is no extra time, sometimes for days, weeks or months.  That is why Forums like this exist.

I will do my best to offer a short summary of my advice.  Honestly, I would like to give you a really meaningful answer that could help you avoid reinventing the wheel that all the other parents before you have reinvented on their own.  I would need to provide a web portal with links to state services and service providers, tips for parents, and a wealth of other information.  If such a website exists, I have not seen it yet.  The State of Florida talks about providing such a portal, but has not yet been successful.  Some nonprofits offer guides that offer broad explanations of autism spectrum disorders and links to service providers, but not enough practical advice.  These guides are helpful to get you started when you first come to grips with the reality that your child may have a disability.  Maybe one day, we can come up with a better solution.  Until then, here is what I can offer this Friday evening; I hope it helps:

Health Care Plans

Your Health Care Plan (Insurance and Self-Insurance).  I recommend that you carefully evaluate ways to get coverage under your health care plan by working within the limits and exclusions specifically applicable to autism spectrum disorders or mental health disorders.  For example, some people have identified service codes that work better than others without specifically identifying the services as related to treatment of an autism spectrum disorder.  Others have cobbled together several types of services in one session where there are limits on number of visits but not on time.   Others have sued for coverage and won!  But, as for the details of how to be successful, that’s a topic for another article - or another very long post.  By the way, in case you do not know yet, right or wrong, autism spectrum disorders (autistic disorder, Asperger’s syndrome, and PDDNOS) are included as a category of mental health disorders in most recent edition of the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association.

Insurance Alternatives.  In my experience, if the health care plan(s) available to your family does not cover the services your child needs, there are not any meaningful insurance alternatives for you to evaluate.  Generally available individual health insurance plans typically offer coverage only for catastrophic health care risks that are generally accepted in the industry.  As I noted in my article (click here to read Chapter 3: Scope of the Mandate – Insurance Coverage), apparently, autism is on a growing list of catastrophic health care risks that health insurers either do not want to cover at all or are willing to cover only at unaffordable rates:

 “The Florida Insurance Council says “autism is not a rehabilitative condition; it may be treated but not cured.”  [NOTE: Interestingly, the FIC hid this article from public view in its original web location, but, thanks to Google, here it is.]  Apparently, some health insurers have denied coverage for treatment of an autism spectrum disorder based on such a conclusion, stating that the insurance policy only covers rehabilitative services.”

Even the insurance solution for Florida’s uninsured that Governor Crist proposed, Cover Florida (which I also address in my article), does not help:

“Cover Florida, a new low-cost health insurance plan Gov. Charlie Crist says will address the problem of the uninsured, looks like a dud before it gets out of the gate.”

“The Center for Budget and Policy Priorities, a Washington-based organization that studies the working class, says Cover Florida is unlikely to reduce the number of uninsured people living here.”

“Turns out the working poor aren't enthusiastic about spending $150 a month for a bare-bones health policy that comes with high out-of-pocket expenses and low limits on coverage. For starters, the plan might exclude pre-existing conditions. It definitely will exclude coverage for certain illnesses and conditions that other insurance carriers must cover by law. Cover Florida comes with no such mandates, which is why the premiums are lower.”

‘But now it seems Florida's health insurance carriers are lukewarm to the notion of getting involved in the program.”

“A Humana spokesman told the Naples Daily News that the company already offers a low-cost, high-deductible plan, and it doubts Cover Florida will have a major impact on solving the problem of the uninsured in Florida.”

http://www2.tbo.com/content/2008/aug/06/na-crists-health-insurance-plan-falling-apart-befo/ 

Alternatives to Your Health Care Plan

Birth through Age 2

If your child is not yet 3 years old and has a developmental delay or an established condition likely to result in a developmental delay, you can use Medicare part C to provide therapy for your child, including speech, OT, PT, and behavioral therapy.  These services are available in Florida through Florida's Early Steps System with locations identified here.  The Early Steps website includes lots of helpful information, including orientation information and details on eligibility:

Children from birth to 36 months old may be eligible for services through Early Steps based on the following eligibility criteria:

Part C (the federal program for infants and toddlers under the federal Individuals with Disabilities Education Act):

This is a federal entitlement program and has no financial eligibility requirements. Infants and toddlers (birth to 36 months) with an established condition or a developmental delay are eligible.

Established Condition - The child has a diagnosis that has a high probability of resulting in disability or developmental delay, in one of the following areas:

Autism Spectrum Disorder

Genetic /Metabolic disorders

Neurological disorders

Severe attachment disorders

Significant sensory impairments (hearing impairment or vision impairment)

Once you contact Early Steps they will send an evaluator to your home to help you through the intake process. I can offer a few tips.  If you suspect your child is autistic, insist on receiving behavioral therapy (ABA).  You do not need a diagnosis, only a developmental evaluation from Early Steps.  Do not settle for an in home visit every few weeks from a behaviorist (although this service is also valuable).  Make sure your child receives direct behavioral therapy.  If you are not persistent (and sometimes even if you are), even if a child qualifies, it may take a year or more for the child to receive behavioral therapy.  To receive direct behavioral therapy, you may need to drive to a therapy center, which can be an hour or more from your home.  No promises, but the amount of services otherwise available under your employer’s health care plan should not be impacted if you use these services.

In Broward County, which is the county I know best, Nova Southeastern University offers an early intervention intensive language classroom program three mornings a week called Starting Right.  Their services are very beneficial to meet a child’s language and behavioral therapy needs. 

Miami Children's Hospital Dan Marino Center also offers the same kind of program for 2 to 3 year olds.  A speech therapist runs this program.

Starting at Age 3

For a child age 3 and older, the school system takes over and the entry point is through Child Find Services provided by The Florida Diagnostic and Learning Resources System (FDLRS)  Different counties have their own websites, for example Broward Schools Child Find Services.  Once you contact Child Find, they will give you a complete psychological and developmental evaluation of your child at no cost (such an evaluation can cost several thousand dollars if you pay for it yourself).  This evaluation will determine a child’s ESE (exceptional student education) placement in the school system.  

Sadly, there is only one public preschool in the entire country solely for autistic children, and it is the Mailman Segal Institute's Baudhuin Preschool, located on the main campus of Nova Southeastern University in Broward County.  Parents fight to get their kids in there, though the disadvantage is that the school offers no meaningful inclusion services.  However, they offer in-house OT and speech services, and also have an in-house BCBA for behavioral support.

If your child’s disabilities are less severe, Broward offers placement in a Preschool Language Activities Classroom Experiences Program (PLACE) or Complex PLACE program (see item 21).  These programs are for children with many different kinds of disabilities.  The disadvantage of such a program is that teachers may not understand a child who has speech and language issues and the teachers may not teach the child in the same manner as they would at a school specifically structured for children with autism spectrum disorders or other developmental disabilities.  

The important thing is to keep moving and concentrate on mostly scientifically validated therapies, such as ABA.  I recommend that any school program you select should have ABA principles embedded into every aspect of their program.

Whether or not you can afford it, I recommend that you evaluate ways to supplement any school alternative with behavioral therapy.  You would need to consult a BCBA to determine how many hours are appropriate for your child.  A school like Baudhuin can be great for socialization, OT, and PT. But, some children need intensive ABA therapy for language development.  I recommend that you evaluate behavioral therapy even if you cannot afford it solely because it is essential that you understand how much of a difference such therapy can make if you implement an intensive program early.  Once they learn this, many parents do their best to find a way to offer their child as much behavioral therapy as possible, whether they have to mortgage their house or fight for public or nonprofit funding.  It is not a pleasant topic to consider or write about, but it is a topic that must be discussed. 

I expect that many Floridians believe that the Florida autism legislation will help their children, their family, or their friends pay for such services.  I expect that many of these Floridians will be depressed or angry when they first learn that this legislation will not provide the help their children need.  I know how I felt after I learned that no more than 14% of the children in Florida with autism spectrum disorders could expect to be helped by the autism insurance mandate, and that the developmental disabilities compact could reduce that percentage as low as 0%. 

Floridians who understand the devastating effects of autism must work together and form a meaningful coalition to promote meaningful change.  Our legislators need to win the battle they have only just begun to fight – the battle to give all of Florida’s children a realistic opportunity to lead a normal life.  These children cannot help themselves and most parents do not have the resources to give their children all of the help that they need to be contributing members of society.

Richard