financial information

Private Insurance Coverage and Legislation

Tragically, most states do not require private insurance companies to cover essential autism treatments and services. In fact, most insurance companies designate autism as a diagnostic exclusion, meaning that no autism-specific services are covered, even those that would be used to treat other conditions. In the absence of coverage, however, families often pay as much as they can out-of-pocket for services in order to help their loved one improve their quality of life.

Fortunately, autism advocacy groups are working hard to change state insurance laws to require private health insurance policies to cover the diagnosis and treatment of autism spectrum disorders for individuals under the age of 21. Currently there are fifteen states that have passed mandatory insurance reform requiring insurance companies to cover treatment for individuals with autism. The following states currently have a law in place that requires private insurance companies to cover autism services to some extent, sometimes including Applied Behavior Analysis.

Pending Legislation
In addition to these state initiatives for autism insurance reform, the federal government is considering legislation through the Autism Treatment Acceleration Act of 2009—Federal Autism Insurance Reform (S. 819, H.R. 2413). If passed, the Autism Treatment Acceleration Act will require all insurance companies across the country to provide coverage for evidence-based, medically-necessary autism treatments and therapies. We urge you to get actively involved with local advocacy groups like Autism Speaks, to support this critical legislation that is so desperately needed.

Private Insurance
To see if your insurance plan covers any services, first you must get a copy of the “Summary Plan Description” and any amendments and/or clinical bulletins made to your policy from your employer. Because autism is not a covered diagnosis under many insurance plans, you may have to review the plan to see what is covered under the “mental health” or “medical health” benefits.

Next, you must get a list from your pediatrician of all of your child’s medical and mental diagnoses and their correlating diagnosis codes. Then, you must call your insurance company to find out what is covered.

When contacting your insurance company to inquire whether or not they provide coverage for autism and related therapies, be prepared to ask:

As with most things in life, the more pleasant you are on the phone, there exists a better chance of developing a positive relationship with an insurance company representative. Ask for the name and extension of the representative you deal with and if the call goes well, try to contact that person again as they may become a good ally. If you are denied benefits for certain diagnosis codes, ask your pediatrician to write letters on your child’s behalf stating why the therapies would be beneficial and be prepared to file a written appeal.

Additional Funding Resources

Another funding source that may be an option is your state’s Medicaid Program. The Centers for Medicare and Medicaid Services (CMS) supports services to meet the needs of people with autism through Medicaid autism and developmental disability programs. Medicaid accounts for 75% of all funding for services for the developmentally disabled, making it the largest single public payer of behavioral health services.†

These programs operate under CMS’s home and community-based services waivers that allow individuals who would otherwise need long-term care in nursing homes or other institutional settings to receive coverage for long-term care services in community settings. States determine the types of long-term care services they wish to offer under the waiver. For example, states with autism or developmental disabilities waiver programs may cover the costs for specific disability-related services—such as speech therapy, occupational therapy and respite care—when those services are not otherwise covered under the state’s Medicaid program. States’ autism waiver programs generally offer the same services as their developmental disability waiver programs; the primary difference is that the autism waiver program may offer early intervention behavioral therapies targeted to young children.

As of April 2006, CMS reported that 44 states and the District of Columbia had developmental disability waiver programs, and three states had autism waiver programs. The states CMS reported to us as having waiver programs specific to autism are Indiana, Maine and Maryland.

In the two states operating both waiver programs, a person eligible for the state’s autism waiver program could also be eligible for the state’s developmental disability waiver program. However, in these states, a person can only receive services under one waiver program at a time.

Although Medicaid’s autism and developmental disability waiver programs support the provision of treatment services for people with autism, many people with autism may be unable to obtain services through these programs because they do not meet the programs’ eligibility rules or because states limit enrollment. To be eligible to receive services under the programs, a person would need long-term care in a nursing home or other institutional setting in the absence of the waiver. As a result, people at the higher functioning end of the autism spectrum, including people with Asperger’s Syndrome, are generally not eligible to receive services under the waiver programs. Furthermore, states are allowed to cap the number of people who can enroll in these programs.

In some states, enrollment waiting lists for the waiver programs are several years long. Because some autism interventions have been found to be effective only when applied by a certain early age, children with autism who remain on waiting lists for several years may exceed the eligible age range for the intervention before they can enroll in the waiver program. Officials in one state claimed the average length of time a person is on the waiting list for either its autism or developmental disability waiver program exceeds five years. This state requires that a specific intensive one-on-one intervention be covered under its autism waiver program; however, state officials stated that in practice no child has ever received the service through the Medicaid waiver program. Because a child must receive the intervention by age six, and children are not usually diagnosed with autism until age three, by the time they come off the waiting list, they are no longer eligible for the intervention.

CMS has another waiver program that can assist people with autism and other disabilities. According to CMS, as of April 2006, 12 states were operating Independence Plus waiver programs. These waiver programs, which allow participant input, support services that teach skills such as planning, budgeting, and decision-making. The Independence Plus waiver programs also support home and community-based services such as respite care and transportation for people with disabilities, including developmental disabilities. States with Independence Plus waiver programs are Alabama, Connecticut, Delaware, Louisiana, Maryland, Mississippi, Montana, New Hampshire, North Carolina, North Dakota, Rhode Island and South Carolina.

State Early Intervention Programs
For children under three years of age, your state’s Early Intervention program is responsible for providing evaluations as well as appropriate therapy. It is crucial that you contact your local Early Intervention immediately to get them involved so that they can complete their evaluation and set up a service plan for you. Unfortunately, sometimes the system can be backed up, so you must be proactive in seeking out services and finding therapists on your own. Equally important is your participation in your child’s therapy. Parents must be able to carry on interventions and strategies after the therapy session ends as they are the ones providing the around-the-clock care. Your family will become your child’s number one therapist.

Local School District Services
After the age of three, your state’s Early Intervention services are turned over to your local school district and you will then begin negotiating services with them. It is extremely helpful if you have your Early Intervention therapists and pediatrician write a report prior to your first meeting with the school district. This way, you attend the meeting prepared and ready to negotiate what services may be provided. It is also recommended that you contact your local school district six months in advance of your child’s third birthday. This enables the school district to prepare for your child’s entrance into the system.

As your child receives services from your local school district, they will convene an Individualized Education Plan meeting annually to articulate the goals and objectives for each school year. By participating in your school district’s special education program, your child will be afforded all of the educational rights found within the Individuals with Disabilities Education Act (IDEA).

† Lisa A. Ruble, Craig A. Heflinger, J. William Renfrew, Robert C. Saunders, “Access and Service Use by Children with Autism Spectrum Disorders in Medicaid Managed Care”, Journal of Autism and Developmental Disorders, 2005.