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The State of Florida Senate Bill 2654 Passed on May 2, 2008, the Florida Insurance Bill required the Office of Insurance Regulation to develop a workgroup to negotiate a developmental disabilities compact that will bind health insurers and HMOs throughout the state to insure persons with autism and developmental disabilities (Autism Speaks, 2008). In addition to mandating the investigation of a potential Medicaid funding for families 5 years of age and under, the bill requires the development of a …compact that will include the following components:
- A requirement that each signatory to the agreement increase coverage for behavior analysis and behavior assistant services, speech therapy, physical therapy, and occupational therapy;
- Procedures for clear notice to policyholders identifying the amount, scope, and conditions under which the services described in the preceding bullet point are provided;
- Penalties for documented cases of denial of claims for medically necessary services for a developmental disability; and
- Proposals for new product lines that may be offered in conjunction with traditional health insurance and that provide a more appropriate means of spreading risk, financing costs, and accessing favorable prices. (Autism Speaks, 2008, pp. 2-3)
Should the compact not be signed by all participants or agreement is not reached, on April 1, 2009, the Autism Mandate will be implemented. The Autism Mandate includes screening for infants and toddlers for diagnosing autism and “treatment of autism through speech therapy, occupational therapy, physical therapy, and applied behavior analysis provided by certified behavior analysts, psychologists, clinical social workers, and others (Autism Speaks, 2008, p. 3).” The mandate covers individuals under 18 years of age or in high school diagnosed with a developmental disability at or before their eighth birthday with autism, Asperger’s, or Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). The mandate also provides the following limitations of coverage:
- Coverage is limited to treatment that is prescribed by the insured’s treating physician in accordance with a treatment plan.
- Coverage is limited to $36,000 annually and may not exceed $200,000 in total lifetime benefits. Beginning January 1, 2011, these maximum benefits will be adjusted for inflation.
- Coverage may be subject to other general exclusions and limitations, including coordination of benefits, participating provider requirements, restrictions on services provided by family members, and utilization review, including the review of medical necessity, case management, and other managed care provisions. Coverage, however, may not be denied on the basis that services are habilitative in nature. (Autism Speaks, 2008, p. 4)
What is Autism?
The incidence of autism has increased exponentially in the last 20 years and continues to increase across the United States. The CDC put the present incidence of autism at 1 out of 150 births (AMDD, 2007), with males noted to have rates as high as 1 out of 94. It is still unclear whether the increasing incidence of autism, that has caused some to speak of an “autism epidemic,” is due solely to widening the parameters of diagnostic criteria and better identification across the spectrum or to some unidentified environmental or biological agent or agents that are increasing actual numbers of cases. Regardless of the cause of the increase, the number of individuals diagnosed with an autism spectrum disorder has greatly strained the finances of families, communities, and education providers attempting to help these individuals to be successful and live meaningful and productive lives.
Autism is a complex neurobiological disorder that includes significant compromises to communication skills, socialization abilities, and behaviors during child development. Appearing before the age of 3, but sometimes not diagnosed until later in life for higher functioning individuals, the autism spectrum disorders (ASD) most typically include diagnoses of Autistic Disorder, Asperger’s Disorder, and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). These 3 diagnoses make up the bulk of the individuals falling under the umbrella of PDD in the Diagnostic and Statistical Manual, Fourth Revision (DSM-IV; APA, x). The diagnosis occurs with equal frequency across socio-economic boundaries and ethnic groups with 4 males diagnosed or every female. One of the most challenging aspects of assessment and intervention with individuals with ASD is the heterogeneity of the population. Some individuals may fall in the gifted range of functioning and exhibit severe socialization and communication difficulties; others may fall in the range of mental handicap and evidence only minor social and communicative difficulties. Still others may be mild and high functioning, and others may be severe and lower functioning. The 3-pronged focus of the ASD diagnosis of qualitative impairments in socialization, communication and restricted behaviors are the elements they share in common. Autism presents itself as early as birth and infancy and is devastating for families as children do not develop early preverbal communication skills, do not develop early socialization skills and often do not develop language in a typical fashion. One thing that children with autism all have in common, despite their differences, is that they do not grow out of the disability with age. Without early intervention, symptoms are likely to become more prevalent and severe, as well as to interfere more with daily living and education. Hence, children are likely to become more disabled, without early intervention, as they are unable to meaningfully access educational programs and they fall farther and farther behind their peers in abilities.
Arguments for ICUBA Implementing the Autism Mandate or Insurance Compact
Although ICUBA is clearly not required to participate in the compact or meet the required insurance coverage of the Autism Mandate, there are several compelling arguments for extending coverage in these areas. Autism Speaks has done an excellent job of articulating the global issues that argue for the creation of insurance coverage in their document Arguments in Support of Private Insurance Coverage of Autism-Related Services (Autism Speaks, 2007) which can be accessed at http://www.autismvotes.org. In addition, information regarding Florida and specific comments from constituents can be found in the letter from Autism Speaks to State Representative Porth which can be accessed at http://www.autismvotes.org. The following are therefore arguments that are specifically relevant to the university populations served by ICUBA and focus on the societal and personal impact of the provision of coverage.
Early Intervention Can Significantly Reduce Societal Costs Later in Life:
The earliest, and most compelling, study indicating the impact of early intervention using the principles of Applied Behavior Analysis was conducted by Lovaas and published in 1987. Since that time, studies have verified his results and demonstrated the longevity of the intervention (McEachin, Smith, & Lovaas, 1993). In Lovaas’ study and McEachin and his colleagues’ follow up, 47% of the children who received 40 hours a week of systematic instruction for 2 to 3 years prior to the age of 5 had significantly improved outcomes in school placements, adaptive behavior, and in IQ scores. Children who received no intervention or who received 10 hours of nonspecific intervention had significantly poorer outcomes. Further replication studies have found similar effects for similar numbers of children (Cohen, Amerine-Dikens, & Smith, 2006; Sallows & Graupner, 2005). While it is clear that there are still a significant portion of children who do not reach the best outcomes, research further indicates that, even for those children who are not the high responders, increased cognitive ability, ability to attend and be ready for school, and communication skills can improve (Sallows & Graupner, 2005). Based on this research, Jacobson, Mulick & Green (1998) developed a cost-benefit assessment of the impact of early intensive behavioral intervention provided at 3 years or age or younger. Their assessment demonstrated an estimated cost savings per child of $2,439,710 in inflated dollars over a child’s lifetime given a statistic of 40% of the children reaching normal range of functioning through early intervention. Ganz (2008) found that “The lifetime per capita incremental societal cost of autism is $3.2 million. Lost productivity and adult care are the largest components of costs (p. 1).” He also noted that direct medical care costs are approximately 2 times the average for individuals with autism throughout their life span. Indirect costs associated with lost productivity of parents in caring for their child with autism, legal fees for securing services through insurance and schools and providing early intervention services out of pocket if they are not covered through insurance are just some of the examples of the further impact of autism on the family and on society. It is was clear from his analysis that adult services and lost wages due to the disability by the person with autism as he or she becomes an adult make up the significant portion of the increased medical care costs incurred by these individuals. Hence, coverage of early intensive intervention services can save significant costs to societies and families, as well as insurance companies, by helping the individual with autism to both be more independent and contribute meaningfully back to society.
Therapies Recommended by the Current Florida Insurance Legislation Are Well Established.
Government and scientific organizations have endorsed Applied Behavior Analysis (ABA) and other structured behavioral therapies as being the most promising treatments for individuals with autism spectrum disorders (Autism Speaks, 2008). In 2001, the U.S. Surgeon General endorsed ABA as an effective treatment for increasing communication, reducing maladaptive behaviors and increasing socialization. Both New York Department of Health (1999) and Maine Administrators of Services for Children with Autism (2000) have validated the use of ABA in early intervention as effective through their intervention programs for children with ASD. The National Institute of Health (2007) and the National Institute of Child Health and Development (2006) include ABA as a recommended therapy for children with autism. The National Research Council (2001) supported the use of ABA in its review of evidence-based practice in teaching communication. Further, Simpson et al. (2005) and the Association for Science in Autism Treatment (ASAT; 2008) have indicated that ABA is a research-based practice in the intervention with children with ASD (Autism Speaks, 2008). Finally, the American Academy of Pediatrics endorsed ABA as one of the primary effective interventions for young children with autism in their position paper (AAP, 2007).
The Cost to Families is Prohibitive.
Currently, the cost of providing early intensive behavioral intervention for children aged 2 to 5 ranges from $30,000 to $50,000 per year. Costs include consultation by a Board Certified Behavior Analyst or Board Certified Assistant Behavior Analyst as well as paying tutors who provide the day to day therapy for up to 40 hours per week 1-1 with the child. In addition, families pay out of pocket for speech, occupational and physical therapy because the intensity of services is typically not covered by insurance. While services are provided for children under 3 years of age through Florida’s Early Steps, the Part C Early Intervention provider of IDEIA services in Florida, Early Steps is the payer of last resort and typically relies on the family’s insurance to cover the majority of services. When insurance does not cover specific expenses, Early Steps may offer speech therapy or occupational therapy 1 time per week or 2 times per month. At this time, Early Steps does not provide the intensity of services recommended by research to make the significant gains discussed that can prevent the need for costly services later. To afford to provide what is perceived as best or appropriate intervention for young children with autism, parents have been known to take out second mortgages or sell their family homes, borrow from banks as well as from families and friends, and even to move to other states that will provide better coverage or services for their children. They spend their savings, cash in life insurance policies, and dip into retirement and college accounts to help their child to make the gains he or she needs just to meet the milestones that typical children reach without specific instruction.
American Academy of Pediatrics Requires Screening for ASD
In 2007, the AAP put forth 2 position papers on autism. One focused on the need to include ASD screenings in the well-baby visits families make to pediatricians at 18 and 24 months of age. The other focused on appropriate resources and interventions for young children with autism. Consequently, it is expected that more children will be identified early and have access to effective intervention at earlier ages. However, without insurance coverage or some other type of funding, this screening may only inform parents about the possibility of a diagnosis of autism, but leave them without the funds to pursue diagnosis and identification as well as intervention. In an age when we are able to provide significant impact with early intervention to this population, screening without the ability to follow through with diagnosis and intervention would be irresponsible.
Universities Provide Training Programs and Clinical Services to Children with Autism and Their Families
Finally, one additional reason for ICUBA specifically to create autism coverage within the universities’ healthplans is that universities are traditionally the organizations conducting research into effective interventions, providing direct clinical services through university clinics in diagnosis as well as intervention, and training professionals in speech and language pathology, occupational therapy, physical therapy, and behavior analysis to work with individuals with autism spectrum disorders and their families. As such, it seems sensible for the same employees engaged in providing these services to have coverage of autism disabilities for their own families. Nova Southeastern University, for instance, has recently placed autism at the forefront of an agenda of issues and is in the midst of gathering information about autism initiatives across the university. The university has formed the Interdisciplinary Council for the Study of Autism (ICSA) that brings all the centers across the university together to collaborate in developing innovative services and research to serve this population and their families. Through ICSA and the Mailman Segal Institute for Early Childhood Studies, a diagnostic clinic for children up to the age of 5 is opening to provide collaborative evaluations of young children. The Center for Autism and Related Disabilities (CARD) center has a branch at Nova in addition to branches at University of Miami, and Florida Atlantic University.
