Raising Children on the Spectrum in Florida: Navigating Roads Less Traveled
Robert Frost once wrote, “Two roads diverged in the wood, and I — took the one less traveled by, and that has made all the difference.” 1 When a child with autism becomes a part of a family, that family embarks on an entirely different road than the one that they thought they had entered. The family faces many familial and legal challenges. Autism spectrum disorder (ASD) is a complex developmental disability that affects about one in every 150 American children and one in every 94 boys, according to data from the Centers for Disease Control and Prevention.2 These children, who look perfectly normal, have communication, socialization, and/or behavior challenges. Some say the divorce rate of families with autism is nearly 80-90 percent.3 Others disagree with that percentage and opine that it is subject to dispute and that marriages are made more stable when a child is diagnosed with ASD.4 Nevertheless, autism parents contemplating separation or divorce should share common goals to ensure that the needs of these special children are provided for both on a short-term and long-term basis. These children are on the spectrum because they display differing characteristics — not one child on the spectrum is like another. This article discusses current legislation applying to the needs of these special children and discusses considerations to be addressed for Florida families and divorcing parents.
Legislative Update
During the 2008 Florida legislative session, Senate Bill 2654 was passed amending/creating several statutes relating to health insurance requirements and Medicaid services, resulting in expanded coverage for the treatment of autism spectrum disorder in children. This bill was approved by the governor on May 20, 2008, and the effective date of this legislation was July 1, 2008. The bill created F.S. §627.6686, requiring health insurance plans to provide coverage for screening and diagnosis, intervention, and treatment of ASD. The statute applies to health insurance plans as defined by statute that are issued or renewed on or after April 1, 2009. 5
The Window of Opportunity Act, F.S. §624.916, has been created to require the Office of Insurance Regulation to convene a workgroup and, beginning February 15, 2009, submit reports annually to the governor, the president of the Senate, and the speaker of the House of Representatives regarding the implementation of the agreement negotiated concerning insurance and access to services for persons with developmental disabilities. In response to this new initiative, the Florida Psychological Association (FPA) ASD Network was formed to track the developments emanating from the Governor’s Task Force on ASD. Members of the FPA ASD network serve children with autism and their families through efforts in hospitals, evaluation centers, universities, medical schools, educational settings, and private practice.
The Steven A. Geller Autism Coverage Act (F.S. §641.31098 and §627.6686) establishes requirements for some health insurance plans and health maintenance contracts to provide coverage for services for ASD. Those services include well baby and well screening for ASD, and treatment of ASD through speech therapy, occupational therapy, physical therapy, and applied behavior analysis. Coverage for such services is limited to $36,000 annually and may not exceed $200,000 as the total lifetime benefit. Coverage will be limited to those services described in a treatment plan by a treating physician. Eligible individuals include those children under 18 years of age, or students who are 18 years of age or older who attend high school. The disability must have been diagnosed prior to eight years of age.
This legislation will help assist families with children on the spectrum in covering expenses associated with various therapies that are now not being covered by health insurance plans which qualify under the statute. Traditionally, parents have supplemented the payment of these expenses by securing loans, home equity lines of credit, mortgages, and other sources. Some families have reported expenses of $6,000 per month, while others have reported taking mortgages and lines of equity exceeding $50,000.
For families experiencing divorce or separation, the presenting problem and solutions regarding adequately caring for these ASD children becomes more complex. Each parent’s desired lifestyle, value of money, and where that money is to be spent often differs. The goals and dreams a parent has for his or her child with special needs may differ from another parent in many ways. One parent may not openly embrace the diagnosis or recognize his or her child has ASD. In addition, there may not be enough money to pay for all of the ASD child’s medications, communication equipment, therapies, sensory integration, supplements, dietary needs, special foods, or other needs. Sensory integration dysfunction (SID) is a common, but often misunderstood problem for an ASD child. SID affects the child’s behavior, influences the way the child learns, moves, relates to others, and feels about themselves.6 A parent may not recognize the child is affected, and may not be open to much-needed treatment.
During divorce, a stay-at-home parent may need to return to the workforce, increase work hours, or obtain secondary employment.7 As a result, the ASD child may have longer days in day care or before and after care school programs, receive less time and nurturing from the stay-at-home parent, and be unable to participate in therapy because the parent who used to transport the child to therapy now must be fully employed. This situation is true unless the court has awarded child support and/or some form of alimony to the primary caregiving parent which enables that parent to be more available to assist the child.8 Alimony may be awarded based on the needs of a recipient spouse and the ability to pay by the payor spouse as well as the consideration of other statutory factors. 9
As courts address cases involving these special children, the court must take into consideration all concerns for these children in the drafting, implementation, and approval of the parenting plan and time-sharing schedules for them.10 These plans may include the development of a positive behavior intervention plan for the ASD child to target disruptive or destructive behaviors. But not all ASD children exhibit these behaviors. Some ASD children need help developing requestor skills, i.e., the ability to communicate a request or need, such as relaying the need for sustenance or play objects. In addition, there most likely will be a need to develop activity schedules, choices and task lists to reduce obsessions, compulsions, and/or stimming behaviors for the ASD children. 11 For the schedule to be effective, parents will find they must follow a consistent and structured schedule in both separate households. These children need structure, consistency, love, and support from both parents when implementing the parenting plan and timesharing schedule. Each ASD child has unique special needs, and each parenting plan will be unique to address those needs.
Ultimate Decisionmaking Responsibility
In ordering shared parental responsibility, the court has the authority to make a finding and order that it is in the best interests of an ASD child for one parent have ultimate responsibility to that child’s welfare, including the residential schedule, education, health care, dental care, and any other responsibilities that the court finds unique to a particular family. 12 Often, parents are not on the same page with regard to treatment decisions. For example, one parent may believe the ASD child must eat gluten-free, casein-free foods to help decrease ASD symptoms while the other parent wants to give the child all kinds of foods because those foods are child-pleasers. An expert should be consulted to prepare for court hearings. A licensed psychologist, the child’s pediatrician, or other pediatrician may also aid the court in decisionmaking and developing the parenting plan. The court may also decide to divide responsibilities between parents. Decisionmaking responsibilities addressed by court order are enforceable by the appropriate motion for enforcement.
Parenting Plans: Typical Siblings
An experienced ASD parent once said that when their child with ASD is having a good day, the entire family is having a good day. When their ASD child is having a bad day, everyone in the family is having a bad day. 13 In many cases, ASD children have typical siblings. The good and bad days affect these typical children as well.The parenting plan for the typical sibling may have different components. One-on-one time-sharing with the typical sibling may berecommended. Siblings not suffering from ASD often feel they are being treated unfairly because their own minor behavior problems (i.e., arguing with their parents) are often punished, while those of the autistic child are not seen in the same light. 14 The parenting plan should specifically address the typical and ASD children.
Psychologists are often consulted to assist ASD children and their siblings, and to develop a parenting plan. Studies have found that siblings of boys with autism scored significantly higher on depression than the comparison group, but not higher for other problems of social adjustment. 15 It is also important to note there is case law supporting keeping siblings together during relationship breakups.16The siblings need each other during difficult times and benefit from each other developmentally and emotionally.
Child Support Considerations
Child support is calculated based on the income of the parties and is also dependent on the timesharing schedule of the parties with the minor children.17 The court may order payment which varies, plus or minus five percent, from the guideline amount, after considering all relevant factors, including the needs of the children.18 The court may order an additional amount of child support above five percent, provided the appropriate written findings are made explaining why ordering payment of the standard guideline amount would be unjust or inappropriate. 19 Many of the expenses associated with the treatment of ASD children are not traditionally included in the child support guideline worksheet, and must stem from an agreement for deviation from the statutory amount or, alternatively, a deviation awarded by the court. In addition, the court may also adjust the minimum child support award based on extraordinary expenses and/or costs associated with the disability of the child. Finally, the court may deviate from the statutory child support guideline amount based on the separate consideration of need in order to make an adjustment to “achieve an equitable result.”20 If the expenses of the special needs child are to be addressed and listed separately in any agreement or order and are not made a part of ongoing monthly child support, it is important to be clear and precise in any language used to reduce as much future dispute as possible.
For ASD children, child support can be extended beyond the Florida age of majority (age 18), provided that the child is dependent because of a mental or physical incapacity which began prior to the age of majority.21 Discovery and diagnosis of the condition are critical to timing issues in family law cases. If discovery or diagnosis is made after the entry of a final judgment, this event and any proven increased costs and expenses will affect the child support obligation in a modification proceeding if the statutory criteria for a modification are met. The party seeking the increase in child support will be able to plead for an increase in child support, alleging that a substantial change in circumstances has occurred since entry of the final judgment. In addition, the implementation of a change in the children’stime-sharing schedule may also serve as the basis for a modification.
The petition requesting an extension of child support beyond age 18 must be filed prior to the ASD child attaining the age of 18. Parents generally are not legally bound to support children beyond age 18, unless the parent agrees to do so in a binding contract, or unless one of the statutory exceptions applies. 22 The right to support for an adult dependent child belongs to the child and not to the parent. Any action post-majority where a parent has failed to file the petition timely will be an action which must be filed by the adult dependent child. 23
Special Education Considerations
Special education is one of the two federally funded programs (the other being Social Security) that is an entitlement and is broadly applied to all individuals with a disability. These services are provided by Part C of the Individuals with Disabilities Education Act (IDEA 1.04) and include early intervention for ASD children diagnosed prior to age three and apply to children from birth to age three. Parents can obtain special education services in schools, such as pre-kindergarten class, by contacting the school district superintendent’s office and asking for the special education services office number.
Transition from Part C of the IDEA to mainstream schooling is an important period. Parents face many challenges such as helping their child develop a social network, selecting and obtaining an appropriate education program, and developing a plan with his or her child that reflects the child’s dreams or desires.
Every ASD child who is eligible for exceptional student education (ESE) will have an individual education plan (IEP). An IEP is a written plan for special education for the child. It is important that parents are on the same page when it comes to the plan and for both parents to involve themselves to negotiate an appropriate IEP. Also, parents should schedule frequent parent-teacher conferences, inquire about receiving weekly e-mail updates as to a child’s progress in speech/communication, and assist in homework duties in a structured and consistent setting, scheduling the child’s various therapy sessions accordingly. Positive, open, and full and frank disclosure between parents as to the child’s education is critical in developing a stable environment from an emotional and educational standpoint of the best interests of the child.
Conclusion
Issues involving divorcing parents of ASD children and families in general are becoming more prevalent in the current time. Recent legislation with regard to the intervention and treatment of ASD is expected to provide much needed assistance for Florida families and their children on a broad-based level. Parents are encouraged to work together to provide their children with all familial and legal supports. Finally, parents are to be applauded for their efforts in raising these special children. For certain, these unchartered roads through the woods are less traveled, and parental strength is garnered along the way, making all the difference for these special children.
1 Robert Frost,The Road Less Traveled, Mountain Interval (1920), available at www.bartleby.com/119/1.html.
2 Rebecca Kaplan, Flying Can Be a Rough Ride for Autistic Children, Families, USA Today (July 24, 2008), available at http://www.usatoday.com/news/health/2008-07-23-traveling-with-autism_N.htm.
3 Divorce and Families with Autism, 39th National Conference & Exposition on Autism Spectrum Disorders, Orlando, Florida.
4 Kristina Chew, How High is the Divorce Rate Among Autism Parents? Autism Vox, (September 30, 2007); David Gerardi, Til Autism Do We Part, Spectrum Magazine (February/March, 2008). See Travis Thompson, Making Sense of Autism: the Authoritative Guide for Non-Experts (2007) to better understand the essential principles that underpin autism spectrum disorders.
5 Fla. Stat.§627.6686 (3) (2008).
6 Carol Stock Kranowitz, The Out-of-Sync Child (March 1998).
7 Margaret “Pegi” S. Price, Special Needs Children and Divorce (American Bar Association 2008).
8 Id.
9 Canakaris v. Canakaris, 382 So. 2d 1197 (Fla. 1980). See also Fla.Stat. §61.08 (a)-(g) (2008). Alimony is not available to parents who are not married.
10 See Fla. Stat. §61.13 (2008); Elisha Roy, The End of Custody in Florida: Finally Parents Are Just Parents, 82 Fla. B. J. 10 (November 2008) for a comprehensive discussion of the changes to the implementation, approval of a parenting plan in dissolution of marriage cases, and of the factors the court must consider in adopting a parenting plan. The article also discusses the removal of “custody” nomenclature, which has contributed to litigation.
11 Ellen Notbohm and Veronica Zysk, 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders (2004).
12 Fla. Stat. §61.13(2)(a) (2008).
13 Interview with Donna L. Lorman, president, Autism Society of Greater Orlando.
14 Thompson, Making Sense of Autism: the Authoritative Guide for Non-Experts (2007), at 68-69.
15 Id.
16 Arons v. Arons, 94 So. 2d 849 (Fla. 1957); Doane v. Doane, 330 So. 2d 753 (Fla. 2d D.C.A. 1976); Myrick v. Myrick, 523
So. 2d 172 (Fla. 2d D.C.A. 1988).
17 See Fla. Stat. §61.30 (2008).
18 See Fla. Stat. §61.30(1)(a) (2008).
19 Id.
20 See Fla. Stat. §61.13(11)(a)(1,6,11) (2008).
21
See Fla. Stat. §743.07(2) (2008).
22State, Department of Revenue ex. rel. Ortega v. Ortega, 948 So. 2d 855 (Fla. 3d D.C.A. 2007).
23 Taylor v. Bonsall, 875 So. 2d 705 (Fla. 5th D.C.A. 2004).
Ingrid A. Keller is board certified in marital and family law and practices with the firm N. Diane Holmes, P.A., in Orlando. Ms. Keller received her B.A. from the University of Central Florida (1992) and her J.D. from South Texas College of Law (1995). She is a barrister as well as a member of the Central Florida Family Law American Inn of Court, the Central Florida Association for Women Lawyers, the Orange County Bar Association, the Seminole County Bar Association, and The Florida Bar Family Law Section. Ms. Keller acknowledges the assistance of Amy C. Hamlin in conducting interviews for this article.
This column is submitted on behalf of the Family Law Section, Scott Rubin, chair, and Susan W. Savard, Laura Davis Smith, editors, and Patricia Kuendig, special editor
