Studies show that divorce rates for families with special needs children are as high as 85-87%. As such, it is not uncommon for a family law practitioner to encounter a client with a special needs child seeking a divorce or involved in a custody dispute. Most common are matters involving an autistic child, but most fail to realize that “special needs” is really an umbrella term for a vast variety of different concerns, including physical, behavioral, developmental, cognitive, psychological and emotional issues, each presenting its own unique and wide range of challenges. While N.J.S.A. 9:2-4 does require a court to take into account the “needs of the child” in making an award of custody, our statutes offer little guidance as to how the special needs of the child factor into the decision.
Rare Disease Day, February 28th, is designated to garner awareness for more than 7,000 uncommon diseases which afflict over 30 million Americans. Many of these maladies referred to as “orphan diseases” because the pharmaceutical industry showed no interest in adopting them for research because they provide little financial incentive for the private sector to make and market new medications for treatment/prevention. My daughter Kristin suffered from one such disease, Recessive Dystrophic Epidermolysis Bullosa (r-DEB, commonly referred to as “EB”), characterized by extremely fragile skin and mucosal membranes. Expansive volumes of text do not begin to convey the horrors of EB, which is why it is often referred to as “The Worst Disease You Never Heard Of”. Children and adults alike afflicted with this type and other forms of EB never live a single day without pain. Sadly, in the past, no matter how many times we tried to educate others, we would inevitably encounter those that could not comprehend the disease as evidenced by their response, “Oh, my child has eczema, so I understand.” Undeniably yes, those with eczema do develop patches that cause bleeding and pain, but their fragile “butterfly skin” does not peel off leaving largely non-healing wounds body-wide that resemble second and third degree burns.
To further expand on this subject and demonstrate the impact special needs has on custody/parenting matters I direct my focus to mobility. Kristin utilized a wheelchair in her early years though she was ambulatory. As a fragile fetus she suffered the pain and complications of EB. In her case specifically, as she moved about inside the womb the skin on her left foot sheared off, resulting in a constrictive band of tissue around her ankle. At birth her left foot was completely raw, visibly smaller, growth stunted at approximately 26 weeks. Kristin was born with what she would later refer to as her “little foot” which caused her to walk with a gait.
Additionally, while EB affects the entire body, depending on the severity wounds are almost always prevalent on the joints and extremities, specifically the hands and feet. I recall days when Kristin’s feet were completely raw, covered only in patches of thin scar
tissue in multiple stages of healing. My wife and I marveled at her fortitude, thinking that walking on those extremely tender feet was like stepping barefoot across a bed of burning hot coals or broken glass. Remarkably, Kristin did walk. When she set her mind to slip into her big, fuzzy monkey slippers and climb out of the wheelchair she was unstoppable. On several occasions we watched in amazement as she walked, stood and screamed for over an hour at several concerts just to get her idol, Justin Timberlake’s attention. Personally I believe EB children have intestinal fortitude that professional athletes can only dream about.
I urge you to apply these heart-wrenching facts to the multitude of issues that arise in custody disputes and envision the unique challenges they create. In most cases, parenting time exchanges take place curbside, with one parent picking up or dropping off the child to the other. This is especially true in cases with a history of domestic violence, as exchanges occur curbside, in a public setting or at a police station. Most EB families have a single wheelchair, generally collapsible for transport, provided by their health insurer. Additional wheelchairs, manual or motorized, and/or wheelchair-accessible vehicles are much less common unless a family is fortunate to benefit from the intervention of a government agency or charity. One must remember that in numerous cases involving special needs children, one parent, designated as caregiver is required to leave the workforce, adversely affecting a family’s finances already compromised due to the exorbitant costs incurred for daily care and surgeries. For example, over a decade ago Kristin’s bandages alone cost over $10,000 monthly.
Addressing this conundrum is similar to Hercules versus the Lernaean Hydra, the mythical monster that would regrow two heads for every head chopped off. Planning for the unexpected is virtually impossible. In most cases an EB child is required to exit the wheelchair to enter/exit the parent’s vehicle multiple times for each and every exchange. Factoring in the intense level of pain that exists, it is difficult to balance a parent’s right to parenting time versus the infliction of this pain to comply with a court ordered event. Further, at what age would a child have the right to decline this parenting time to avoid this pain? Generally, traveling in a vehicle is not entirely safe for an EB child, as a simple seatbelt injury causes extensive skin damage, just as a minor car accident can prove fatal. Clearly, a multitude of issues may arise due to the uniqueness of a child’s disability or special needs.
The aforementioned demonstrates why a client must carefully choose a knowledgeable attorney who is capable of hearing and understanding their concerns and well-versed in conveying these life-altering facts to a Court in order to secure a just decision in the best interest of the child. Sadly, in the high volume of New Jersey family law cases it is quite likely that many of these children with special needs get lost in the shuffle, as their parents’ attorneys fail to appreciate and grasp the nature of their unique needs. Our educational system utilizes the Individualized Education Program (IEP) wherein knowledgeable professionals comprised of a collective team of experts in the field, work with the child’s parents to craft a plan for a specific child’s proper placement, specialized instruction and ongoing monitored assistance. It continues to confound me that our
Courts do not craft an Individualized Custody Plan in the same manner, drawing input from multiple professionals and factual sources to thoroughly analyze the impact of the special needs. Although it is true that children spend a formidable amount of time in school, conversely they spend an equal amount of time, if not more, at home. Our Courts order what is referred to as a “best interests” evaluation which does include an analysis of the needs of the child, but also incorporates other statutory factors such as the age and number of the children, the stability of the home environment, the geographical proximity of the parents’ homes, as well as the interaction and relationship of the children with their parents and siblings. The “special needs of the child” often are lost or minimized in this broad analysis, especially as medical experts for certain rare diseases are few and far between. I speak from experience, clearly recalling the countless trips, driving or flying to Cincinnati, OH, Raleigh, NC and NY to consult with professionals familiar with EB as ever-worsening medical issues arose prior to Kristin’s untimely passing.
This in many ways is the purpose of Rare Disease Day – to educate the public on the challenges faced by those who endure these rare illnesses and evoke a comprehensive understanding while encouraging societal inclusivity. Ignorance is the number one enemy of the special needs community. Hopefully this designated day leads to the development of advances in treatments, therapies that one day may initiate the eradication of orphan diseases. In the interim, it protects our special needs children from being ostracized and most importantly helps them to feel accepted as productive, purposeful citizens. Our judicial system should be held to the same standards. The jurisdiction of the Family Court in New Jersey is based upon the common law doctrine of “parens patriae” which imposes upon the Court an affirmative duty to protect the best interests of minor children. It is inherent that the Court focuses on the unique challenges children with special needs face and craft remedies addressing the whole child especially when those needs conflict with a parents’ rights. One Size Does NOT Fit All for these individuals. As attorneys, we should strive to become aware of the hurdles special needs children face daily and modify the system to better address their challenges.