THE INFORMATION PROVIDED IS NOT INTENDED IN ANY WAY TO BE LEGAL ADVICE AND IS ONLY INTENDED TO BE INFORMATIVE MATERIAL FOR YOU TO DISCUSS WITH YOUR ATTORNEY. THIS INFORMATION IS NOT GUARANTEED TO BE ACCURATE. IT IS IMPORTANT THAT YOU DISCUSS ANY QUESTIONS YOU MAY HAVE WITH AN ATTORNEY LICENSED IN YOUR STATE.

Autism is a pervasive developmental disorder (PDD). It interferes with the ability to communicate as well as relate to others. Autism is a lifelong condition that results in some degree of social isolation. In most cases autism affects how a person perceives and processes sensory information. Signs of autism almost always develop before a child is 3 years old, although the condition is frequently not diagnosed until later. Typically, parents first become concerned when they notice their toddler does not respond or interact like other children of the same age. Toddlers with autism do not usually babble or talk normally, and may seem to have hearing problems.

The symptoms associated with autism contribute to a variety of learning problems that necessitate the use of different instructional approaches. Applied Behavior Analysis is one of the best known and most effective methods of teaching children with autism, other modalities include Treatment and Education of Autistic and related Communication handicap children (TEACCH), Picture Exchange Communication System (PECS), Floor-time (also known as Greenspan or Developmental Individual Difference), Inclusion, and Social Stories. A great comparison of the modalities can be found at http://www.wrightslaw.com/info/autism.methods.compare.pdf.

In Indiana, trying to get a school district to provide an adequate Applied Behavior Analysis Therapy Program is very difficult, however it is not impossible. Many schools find that using a modality of approaches is helpful in finding a fit with a child, however there are also schools that for one reason or another fail to appropriately work with a child to find an appropriate therapy or any therapy at all. In those cases it is essential to ask for a case conference and get changes made. It is very important that parents with autistic children get together and are heard by the School Districts in regards the appropriate education for their children – especially when it comes to ABA therapy.

There have been a number of Due Process Hearings in recent years concerning ABA therapy and the bag is very mixed. In many circumstances parents have lost these cases when asking for an exclusive ABA therapy for their child – but all is not lost – please read the information below written by parents who have given us permission to distribute this information. Please also be aware information is not legal advice and is written by a parent not a lawyer or an insurance adjuster.

Letter from a Parent

Dear Friends, Family and Fellow Parents of Children with Autism:

Please see the information below about national efforts to achieve insurance coverage for ABA therapy.  I hope you will take a few minutes to use the sample letters to write your US Representative and US Senator. 

http://www.abatcc.solvethepuzzle.org

Families Fight to Have ABA Therapy Covered by Insurance

More than 20 Northern Virginia federal employee families have launched an effort to have their insurance providers cover Applied Behavioral Analysis (ABA) therapy for their autistic children. Their objective is to have the Office of Personnel Management (OPM), which currently has no policies on autism treatment, to develop guidelines that would require insurance companies within the federal health benefits system to extend coverage of ABA therapy to their enrollees. They also hope that their initiative will benefit families in the military and the private sector.

The families' effort is being supported by Representatives Chris Smith (R-NJ) and Mike Doyle (D-PA), co-chairs of the Congressional Autism Caucus, congressmen from various Northern Virginia districts, as well as by John Gage, National President of the American Federation of Government Employees, which represents some 600,000 federal workers. Separately, these supporters have written letters to OPM Director Kay Coles James urging her to introduce into federal health insurance guidelines language that would reflect the proven benefits of early behavioral intervention and require that such intervention be covered by insurance.

ABA therapy coverage is already mandated by some US states, and extended by a number of companies in the private industry.

The families hope that their effort will help foster a general recognition among legislators, policy makers and the insurance industry that, in terms of benefits to the autistic child and long-term cost savings, ABA therapy is currently the only effective means for combating a disorder that Congress itself recognized is reaching epidemic proportions.

Even though you might not be a federal employee, your support of this initiative is crucial as it might help establish a general benchmark in the treatment of autism. Please have your lawmakers call on OPM to make ABA therapy coverage part of federal health benefits policy.

To support the campaign, please see our Sample Letters.

Article by a parent

How to Get ABA through Your Insurance Company

By Beverly Chase

If you have an insurance company that is fully funded and is governed by Indiana state laws, there is a mandate (IC-27-8-14.2) that is almost 3 years old that you can use if your child has a diagnosis on the autism spectrum. I am pasting a copy of the mandate below. If your insurer does not fall under Indiana state law it is possible that the state by which they are governed has a mandate similar to ours. I know Georgia and CA. have them but I don't know about the other states. I would suggest contacting the department of insurance in the state that governs your insurer and asking if there is a mandate for PDD-NOS, autism, or aspergers.

If you have a child on the spectrum, I highly suggest you educate yourself on this mandate. Even if you do not want ABA therapy, you can use it to get other services such as speech, OT and PT. The language in this mandate is very broad and was made that way intentionally. The Legislature wanted to make sure that insurers did not use a one-size-fits-all approach because our kids all need different things. Basically the mandate states that if your child is on the spectrum, whatever is on the treating physician's treatment plan (or plan of care) MUST be covered. For example, if Johnny's treatment plan says he needs SLP up to 3 hours a week, then the mandate says this is what the insurers must provide.

I also want to ask that parents and physicians be reasonable. The insurers have cried, and continue to cry, that parents are or will ask for the sun, the moon, the stars. 99.9 percent of us would never ask for more than what is truly needed and reasonable. I do not suggest listing things such as vitamins, supplements and diet related expenses. And by all means do not come up with a family trip to Hawaii... it has happened (or so I was told)... While we all need and deserve a trip/vacation, we do not want to give the Legislature any reason to agree with the insurers that we are being unreasonable.

The insurance companies are not just laying down and saying, “Oh, OK. We will do whatever the mandate says.” They are making most of us (me included) fight for it. But, parents ARE getting their ABA programs (and SLP, OT, PT, etc) funded. So, it is definitely worth it to fight. After 13 months of appeals and assistance from IDOI, we were able to get our home and now, center-based ABA program funded. It was a LONG fight but in the end well worth it. I am so glad I stuck it out as my son is making wonderful progress. The following is a step-by-step “how-to” manual. Most of what is in here I have learned out of experience and from another a parent who is a true pioneer in fighting insurers to comply with this mandate. This is my attempt to pay forward. Please feel free to pass this on to whomever you like. I think it is critical that we use/fight for this mandate. Otherwise Legislators will have fought to give us this mandate for no reason. And I for one refuse to let the insurers win.

Steps to get insurance funding for ABA (SLP, OT, etc)

Step 1: Call the HR dept of employer. Ask the following questions.

1. Is my insurance plan fully funded or self-funded?

If insurer is self-funded then they are exempt from the Indiana Insurance Mandate IC-27-8-14.2 (see copy of it below). However, I would still follow same procedure listed below. Self-funded plans can cover anything they choose, so in that regard has flexibility. I have heard of one self-funded plan, and 1 out of state plan (Eli Lilly & Blue Cross Blue Shield) that covered ABA despite not being required to. So, it is worth a shot!

2. If plan is fully insured, ask HR which state regulates that plan.

If the answer is Indiana, then as an Indiana resident, you are protected under the mandate. And even if the answer is not Indiana, you might be covered under a mandate. For example, California and Georgia are two other states that have similar mandates. The following is a copy of Indiana's autism mandate.

IC 27-8-14.2

Chapter 14.2. Insurance Coverage for Pervasive Developmental Disorders IC 27-8-14.2-1

"Accident and sickness insurance policy" defined

Sec. 1. (a) As used in this chapter, "accident and sickness insurance policy" means an insurance policy that provides one (1) or more of the types of insurance described in IC 27-1-5-1, classes 1 (b) and 2(a).

(b) The term does not include the following:

(1) Accident-only, credit, dental, vision, Medicare supplement, long term care, or disability income insurance.

(2) Coverage issued as a supplement to liability insurance.

(3) Worker's compensation or similar insurance.

(4) Automobile medical payment insurance.

(5) A specified disease policy issued as an individual policy.

(6) A limited benefit health insurance policy issued as an individual policy.

(7) A short term insurance plan that:

(A) may not be renewed; and

(B) has a duration of not more than six (6) months.

(8) A policy that provides a stipulated daily, weekly, or monthly payment to an insured during hospital confinement, without regard to the actual expense of the confinement.

As added by P.L.148-2001, SEC.2.

IC 27-8-14.2-2

" Insured" defined

Sec. 2. As used in this chapter, "insured" means an individual who is entitled to coverage under a policy of accident and sickness insurance. As added by P.L.148-2001, SEC.2.

IC 27-8-14.2-3

" Pervasive developmental disorder" defined

Sec. 3. As used in this chapter, "pervasive developmental disorder" means a neurological condition, including Asperger's syndrome and autism, as defined in the most recent edition of the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association.

As added by P.L.148-2001, SEC.2.

IC 27-8-14.2-4

Group coverage required

Sec. 4. (a) An accident and sickness insurance policy that is issued on a group basis must provide coverage for the treatment of a pervasive developmental disorder of an insured. Coverage provided under this section is limited to treatment that is prescribed by the insured's treating physician in accordance with a treatment plan. An insurer may not deny or refuse to issue coverage on, refuse to contract with, or refuse to renew, refuse to reissue, or otherwise terminate or restrict coverage on an individual under an insurance policy solely because the individual is diagnosed with a pervasive developmental disorder.

(b) The coverage required under this section may not be subject to dollar limits, deductibles, or coinsurance provisions that are less favorable to an insured than the dollar limits, deductibles, or coinsurance provisions that apply to physical illness generally under the accident and sickness insurance policy. As added by P.L.148-2001, SEC.2.

IC 27-8-14.2-5

Individual coverage required

Sec. 5. (a) An insurer that issues an accident and sickness insurance policy on an individual basis must offer to provide coverage for the treatment of a pervasive developmental disorder of an insured. Coverage provided under this section is limited to treatment that is prescribed by the insured's treating physician in accordance with a treatment plan. An insurer may not deny or refuse to issue coverage on, refuse to contract with, or refuse to renew, refuse to reissue, or otherwise terminate or restrict coverage on an individual under an insurance policy solely because the individual is diagnosed with a pervasive developmental disorder.

(b) The coverage that must be offered under this section may not be subject to dollar limits, deductibles, or coinsurance provisions that are less favorable to an insured than the dollar limits, deductibles, or coinsurance provisions that apply to physical illness generally under the accident and sickness insurance policy.

As added by P.L.148-2001, SEC.2.

Step 2: Use the template of the treatment plan letter below if the PCP or other professional is unfamiliar with writing one specific to the mandate/autism.

Take it to, fax it to, mail it to child's PCP, or other professional such as developmental pediatrician, neurologist, psychologist, etc. Send it to any treating physician whom you think would be willing to help. Ask the doctor(s) to use the language in the letter since it encompasses the language listed in the mandate. Be sure they type it on their letterhead and sign it. Ask them to send it to you, not the insurance company. You want to be the one to send the letter *certified* mail. Make sure to make copies.

Sample:

Step 3: While you are waiting on treatment plan letter(s), call your insurance company and request that a case manager be assigned to your child.

If you get the runaround, I would first speak to a supervisor and if needed follow up request in writing. The reason this is important is you will have just one person to deal with. When you call the 800# and speak to customer service representatives you are likely to get incorrect and inconsistent information. Plus it is easier to track information. The reason you state to them verbally and/or in writing that you need a case manager is that your child has a chronic neurological disorder, which will require multiple specialists and treatments. This step is not critical, but will hopefully make life easier.

Step 4: (This can be done in conjunction with, or exclusive of step 3.)

If you have not started an ABA program or other therapies yet, call insurer and notify them that you have a child on the autism spectrum and their treating physician has prescribed ABA, or other therapy for your child. Ask them what you need to do. If you already receive and pay for services, ask insurer what you need to do to get funding. Insurers ask for different things, but you want to make sure you ask if there is a process or procedure they would like you to follow. Chances are they will tell you ABA is not a covered service. That they do not provide services for developmental delays, autism, etc… If you have M-Plan, Aetna or CIGNA, you *might* get someone who tells you a procedure. But most likely you will be told we don't cover it.

Another possibility if asking for ABA therapy, is they will assign you to the mental health division. This is what CIGNA did to us. I suggest trying to keep it out of the mental health division since benefits are less favorable there and the mandate clearly states benefits cannot be less favorable than those under the accident and sickness policy. BUT... if you do end up under a mental health umbrella, don't fret. In addition to the autism mandate there are federal and state mental health mandates. The mental health mandate for Indiana is IC 27-8-5-15.6. Let me know if you need a copy of this, or more support due to placement under mental health umbrella. Regardless of where you end up, if they tell you ABA or autism is not a covered service tell them you have a copy of a mandate (IC-27- 8-14.2) which says they are required to cover what is prescribed on the treating physician's treatment plan. Offer to fax or mail them a copy of both.

Step 5: Fax or mail a copy of the mandate and the treatment plan(s). Remember to request a return response promptly and in writing. If insurer requests copy via USPS, send it via certified mail. Now you wait for a response. If you have given them a full business week after faxing, and 2 business weeks, after mailing, and have not heard anything, I would call them and/or follow up in writing. You want to verify they received everything and ask what happens next.

Step 6: This is where it gets gray and difficult to advise since each case is different.

But, here are some of the things I have either had happen or heard of happening. They tell you they are working on locating providers who are licensed. This is when you inform them there is no license for ABA in Indiana. Another helpful hint is try to steer away from the term "therapist" since it conjures up the need for a license in the minds of insurers. I would use terms such as, line staff, direct one on one ABA instructors, or instructional assistants. Also, steer away from using terms like school, education, educators, teachers, etc. I remember my insurer had a fit over the term "verbal" when I said he was receiving VBA. They tried to say it was speech therapy. From that point on I used the term Applied Behavior Analysis/ABA.

Your insurer might tell you that they will reimburse for ABA up to 60 sessions a year, or a random number of calendar days. Because IC-27-8-14.2 is not a parity law the insurer cannot place these types of limitations based on what is in their policy, the autism mandate and treatment plan supercedes their policy limitations. This means that insurer cannot say they will only provide coverages and limitations that are up to or equal to other members. For example CIGNA tried to say that once licensed professionals were found they would fund up to 60 sessions a year since this is our plan benefit under the mental health plan. They can't do this for 2 reasons 1) they are applying benefits that are less favorable than those provided under the accident and sickness policy and 2) nowhere in the mandate does it say words such as up to, not to exceed, parity law, etc. It says whatever is in the treatment plan.

Step 7: Either turn in claims of ABA services provided if already begun, or appeal decision to not fund ABA.

The appeals procedure is outlined in your benefits handbook, or GSA (Group Service Agreement). If turning in claims expect they will deny them and then you appeal their decision. A helpful hint… Your insurer will deduct co-pays from reimbursements. So be aware that you will not get anything (or very little) back if you have instructor "A" come for 2 hours and then have instructor "B" come in for 2 hours. For example, if both therapists make $10 an hour, that means each one made $20.00 that day. If your co-pay is $10 per provider then you are paying 50/50 match w/insurer. If your insurer decides to charge you a $20 co-pay per provider, per day as mine does, then you will get zero, zilch, nada reimbursed from insurer. I have learned the hard way that it is best to have instructors come for 4 hours or more. If you have a wee one, split the day up but w/the same therapist. Do a rotation of instructor "A" on M, W, F and instructor "B" on T & TH. I wish I would have figured this out back in August!!! CIGNA did finally reimburse, but we got little back since we were doing split days with 2 therapists. Just something to keep in mind when hiring and scheduling staff.

Step 8: At the same time you are appealing with insurer, file a complaint with the Indiana Department of Insurance.

The forms can be completed online or you can mail it to them. For more information contact IDOI's consumer complaint division. The reason this is important is if your complaint is not resolved and is determined valid, IDOI will send it to their enforcement division where an attorney will be assigned. The attorney will investigate and follow through with any regulatory or procedural violations. To be frank, I don't think my insurer would have ever complied with the mandate had IDOI not been involved. Also, it is VERY expensive, but know that you can also consult private attorneys. We checked into this but it was too expensive for us. Be sure the attorney focuses in insurance law, this is critical!

Now for a few reminders…

1. ALWAYS document every conversation you have with anyone during this process. Write down the person's name and/or employee ID#, the date, the time and a detailed summary of the conversation. If you communicate via e-mail, print and save each one. Create a file folder or binder (my choice) for this topic and keep it tidy and organized.

2. As hard as it is, try to remain calm. Stick to the facts. The law is on your side.

3. Know and expect that this might be a long, stressful process that is sure to make you more than angry many times. Even the people you think are trying to help you will let you down. Just try to remember that most everyone is doing their job the best they can, or as they are being instructed to do. Be direct, persistent, but respectful. Just try to find the humor in it and move on.

4. Most importantly, KEEP GOING!!! The insurance companies do not like having to fund anything they don't have to. They are banking that people will not A) know about the mandate B) have the energy or knowledge to fight them on it C) that when they drag their feet long enough that you will finally give up. Unless your sanity or otherwise is at stake, do not give up. This battle is also for everyone else that comes behind you. I am writing this to help you, just as I was helped by someone else. KEEP GOING!!!

Please feel free to e-mail me with any questions. I may not know the answer but I will do my best to help you find it. My e-mail address is love4jake@sbcglobal.net.

***** Disclaimer ***** I am just a mom and have no legal training or background in the insurance industry. My statements and advice are not intended to replace your own research and examination.

AUTISM FACT SHEET

Autism and Pervasive Developmental Disorder:
Fact Sheet

Note : This information was published by the National Information Center for Children and Youth with Disabilities as Fact Sheet Number 1 (FS1) in January 2001. It is in the public domain – but please credit the National Information Center if you use this document.

Definitions

Autism and Pervasive Developmental Disorder-NOS (not otherwise specified) are developmental disabilities that share many of the same characteristics. Usually evident by age three, autism and PDD-NOS are neurological disorders that affect a child’s ability to communicate, understand language, play, and relate to others.

In the diagnostic manual used to classify disabilities, the DSM-IV (American Psychiatric Association, 1994), “autistic disorder” is listed as a category under the heading of “Pervasive Developmental Disorders.”

A diagnosis of autistic disorder is made when an individual displays 6 or more of 12 symptoms listed across three major areas: social interaction, communication, and behavior. When children display similar behaviors but do not meet the criteria for autistic disorder, they may receive a diagnosis of Pervasive Developmental Disorder-NOS (PDD not otherwise specified). Although the diagnosis is referred to as PDD-NOS, throughout the remainder of this fact sheet, we will refer to the diagnosis as PDD, as it is more commonly known.

Autistic disorder is one of the disabilities specifically defined in the Individuals with Disabilities Education Act (IDEA), the federal legislation under which children and youth with disabilities receive special education and related services. IDEA, which uses the term “autism,” defines the disorder as “a developmental disability significantly affecting verbal and nonverbal communication and social interaction, usually evident before age 3, that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.” (In keeping with the IDEA and the way in which this disorder is generally referred to in the field, we will use the term autism throughout the remainder of this fact sheet.)

Due to the similarity of behaviors associated with autism and PDD, use of the term pervasive developmental disorder has caused some confusion among parents and professionals. However, the treatment and educational needs are similar for both diagnoses.

Incidence

Autism and PDD occur in approximately 5 to 15 per 10,000 births. These disorders are four times more common in boys than girls.

The causes of autism and PDD are unknown. Currently, researchers are investigating areas such as neurological damage and biochemical imbalance in the brain. These disorders are not caused by psychological factors.

Characteristics

Some or all of the following characteristics may be observed in mild to severe forms:

• Communication problems (e.g., using and understanding language);
• Difficulty in relating to people, objects, and events;
• Unusual play with toys and other objects;
• Difficulty with changes in routine or familiar surroundings; and
• Repetitive body movements or behavior patterns.

Children with autism or PDD vary widely in abilities, intelligence, and behaviors. Some children do not speak; others have limited language that often includes repeated phrases or conversations. People with more advanced language skills tend to use a small range of topics and have difficulty with abstract concepts.

Repetitive play skills, a limited range of interests, and impaired social skills are generally evident as well. Unusual responses to sensory information -- for example, loud noises, lights, certain textures of food or fabrics -- are also common.

Educational Implications

Early diagnosis and appropriate educational programs are very important to children with autism or PDD.

Public Law 105-17, the Individuals with Disabilities Education Act (IDEA), formerly the Education of the Handicapped Act, includes autism as a disability category. From the age of three, children with autism and PDD are eligible for an educational program appropriate to their individual needs.

Educational programs for students with autism or PDD focus on improving communication, social, academic, behavioral, and daily living skills. Behavior and communication problems that interfere with learning sometimes require the assistance of a knowledgeable professional in the autism field who develops and helps to implement a plan which can be carried out at home and school.

The classroom environment should be structured so that the program is consistent and predictable. Students with autism or PDD learn better and are less confused when information is presented visually as well as verbally.

Interaction with nondisabled peers is also important, for these students provide models of appropriate language, social, and behavior skills. To overcome frequent problems in generalizing skills learned at school, it is very important to develop programs with parents, so that learning activities, experiences, and approaches can be carried over into the home and community.

With educational programs designed to meet a student's individual needs and specialized adult support services in employment and living arrangements, children and adults with autism or PDD can live and work in the community.

Resources

Harris, S. (1994). Siblings of children with autism: A guide for families. Bethesda, MD: Woodbine House. (Telephone: 1-800-843-7323.)

Harris, S.L., & Weiss, M.J. (1998). Right from the start: Behavioral intervention for young children with autism: A guide for parents and professionals. Bethesda, MD: Woodbine House. (Telephone: 1-800-843-7323.)

Hart, C.A. (1993). A parent's guide to autism: Answers to the most common questions. New York: Pocket Books, Simon & Schuster Co. (Telephone: 1-800-223-2336.)

Journal of Autism and Developmental Disorders. [Available from Plenum Publishing Corporation, 233 Spring Street New York, NY 10013. (Telephone: 1-800-221-9369.)

Maurice, C., Green, G., & Luce, S.C. (Eds.). (1996). Behavioral intervention for young children with autism: A manual for parents and professionals. Austin, TX: Pro-Ed. (Telephone: 1-800-897-3202.)

McClannaham, L.E., & Krantz, P.J. (1999). Activity schedules for children with autism: Teaching independent behavior. Bethesda, MD: Woodbine House. (Telephone: 1-800-843-7323.)

Powers, M.D. (Ed.). (2000). Children with autism: A parent's guide (2nd ed.). Rockville, MD: Woodbine House. (Telephone: 1-800-843-7323; (301) 897-3570.)