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He Placed Me and a Little Guy in Each Others' Paths: Raising Children with disabilities is a Community Responsibility

Mar 02, 2022 at 05:02 pm by Christopher


The evening of February 17 2022 was dark, cold, and rainy in the western suburbs of Cincinnati, Ohio. The National Weather Service had issued a Flood Warning for the surrounding area until the early hours of the following morning. Like many local communities throughout Greater Cincinnati, Colerain Township, Ohio had already seen an inch of rain--with another inch or more predicted along with the potential for sleet, snow, and severe weather.

At around 9:00 P.M. at an isolated intersection with no sidewalks, motorists spotted a five-year-old boy wearing no coat, a burgundy and gray sweatsuit, and black Shaq gym shoes wandering alone in the pouring rain. According to initial reports and passersby later interviewed by local media outlets, the boy, who was nonverbal, appeared disheveled. His clothes were soaking wet, and he was attempting to flag down cars in a desperate plea for help.

Local police officials began a search for the boy's family, and he was placed in the custody of the Hamilton County, Ohio Department of Job and Family Services, which launched an investigation. The boy's mother was eventually located and identified as 32-year-old Heather Nicole Adkins of Shelbyville, Indiana, 75 miles from where the boy was found. Two days later, Adkins was arrested on an outstanding warrant at a gas station in Georgetown, Kentucky, 70 miles away, after being spotted knocking on car windows and behaving erratically. She has been charged with Felony Child Endangerment and Kidnapping and is awaiting extradition to Ohio to face the charges.

Media reports revealed that the boy is Autistic and lived with his mother and two other boys prior to February 17, neither of whom have disabilities. According to accounts from a childhood friend in Tennessee who is currently caring for the boys, the mother was high when she dropped them off at her home at around 2:00 P.M. that Thursday afternoon, asking her to care for them. The friend never saw the boy with Autism during her encounter with the mother. Court records indicate that Adkins left the boy on a deserted dead-end residential street near a flooded creek in Colerain Township, Ohio later that evening, where he wandered about a block away to where he was found.

While Heather Nicole Adkins and her family were facing multiple life stressors at the time she abandoned her son--including incarceration and substance use--her family's story is not unique. Raising and caring for a child with special needs and disabilities can be difficult, emotionally exhausting, and overwhelming for even the most resilient and resourceful of families. The constant medical appointments, meetings with school staff and other professionals, and physical and emotional care of a child with disabilities can sap the energy of even the hardiest, most seasoned caregivers. Some children living on the Autism Spectrum, for example, can exhibit self-injurious behaviors and act out violently toward others when frustrated, overstimulated, or experiencing pain or other physical symptoms that they cannot manage.

Children (and adults) with special needs often require a myriad of services to meet their basic physical and emotional needs and function at school and the community. These services include physical, occupational and speech / language therapy, behavior management, physical and curriculum modifications, and adaptive transportation. Professionals from a wide variety of disciplines generally provide these services through an often-disjointed patchwork of private and public agencies, including developmental disabilities, mental health, hearing and visual impairments, and communication disorders like the Autism Spectrum. Coordination among these providers is often limited to nonexistent, requiring the parent or guardian to take on the role of their child's advocate, attorney, teacher, and health care specialist. Many critical services, such as home care, transportation and applied behavior analysis for children on the Autism Spectrum, are not covered by private insurance, requiring families to incur thousands of dollars in out-of-pocket expenses, deplete their savings, and leave their jobs to apply for government benefits and public welfare programs just to qualify for services critical to their basic needs.

In some extreme cases, insurance carriers have encouraged families to relinquish custody of their children to child welfare agencies. According to a 2020 investigative report, 58% of children placed in the custody of child welfare agencies in Georgia had severe mental health or behavioral disorders, 40% have developmental disabilities, and a third have both. The report, which featured interviews with two dozen parents and child welfare agency officials, cited a lack of coordination among the various state and private agencies in charge of caring for children with complex needs, limitations in services and support available to children with specific diagnoses such as Bipolar Disorder and Autism Spectrum Disorders, and a lack of consequences for state agencies that fail to provide legally mandated services such as case management.

Worse is the stigma associated with family members of children with disabilities, particularly mothers. In the 1940's, child development experts like Bruno Bettelheim and Leo Kanner, who first identified Autism in a cluster of pediatric patients while a psychiatrist at Johns Hopkins University in 1943, attributed the condition to the mother's lack of parental warmth and attachment, based on the psychoanalytic theories prevalent at that time. Likening the behaviors of the Autistic children he observed to inmates of concentration camps during World War II, Bettelheim, a University of Chicago Professor and child development expert, coined the term "Refrigerator mother" to describe these so-called detached, uncaring mothers.

Both Bettelheim and Kanner became pre-eminent authorities in Child Psychiatry and Child Development, respectively, and the "Refrigerator Mother Theory" they posited persisted as the standard explanation for the emergence of Autism in children well into the 1980's, with devastating consequences for children and families. To this day, elements of the "Refrigerator Mother Theory" persist among mental health professionals and in popular culture, adding to the stigma and isolation faced by mothers of children with special needs and disabilities.

Conversely, in my own experience as a blind person, I have found that mothers of blind children and adults are often perceived as overly protective and coddling, unable to accept that their children can live their lives on their own. A vice principal at the school I attended in third grade told my own mother that she needed to untie me from her apron strings, despite the academic and social challenges I was facing at the time. This sentiment is also common among the blindness community, including leaders of consumer organizations such as the American Council of the Blind and the National Federation of the Blind in the United States, most of whom are blind themselves.

Finally, many congenital conditions are attributed to perceived poor choices of the mothers during pregnancy, particularly maternal drug and alcohol use. A search of the professional literature on my condition, Optic Nerve Hypoplasia, for example, still yields several articles citing maternal substance use as a factor in the development of children with this condition in gestation. However, the latest findings on the development of children with Optic Nerve Hypoplasia show no connection between births of children with this condition and behavior of the mother during pregnancy.

Given the sometimes overwhelming demands of caring for a child with special needs and disabilities, the isolation and stigma that families face, and lack of services and support, it is no wonder that some mothers are compelled to abandon or give up custody of their children, particularly those already vulnerable or at risk. Those who do abandon their children or relinquish custody to family or outside agencies often face the harshest consequences. In Ohio, for example, child abandonment is considered grounds for termination of parental rights under current child welfare law. Unless the child is an infant, a parent like Heather Nicole Adkins who abandons a child can face criminal charges. In fact, Adkins represents the basic stereotype of the drug-addicted, irresponsible mother who would have no reservations about abandoning their child by the side of an isolated stretch of road.

As a culture, we place an outsized emphasis on the role of the child's immediate, nuclear family to raise, nurture and educate their children, particularly mothers. Many children with and without disabilities are born to families facing social, environmental, emotional, and economic challenges. Add the stress of caring for a child with multiple and complex needs, and the situation becomes untenable for some families, regardless of income level, cultural background, or other family and life stressors.

In 1967, Congress introduced a benefit known as Early Periodic Screening, Diagnosis and Treatment (EPSDT) for recipients of Medicaid, the national public insurance program for individuals with low-incomes, to ensure that children and adolescents enrolled in the program receive medically necessary, age-appropriate screening, prevention, and treatment of identified medical conditions. Individual state governments share responsibility with the U.S. Center for Medicare and Medicaid Services to administer and implement the program.

The Individuals with Disabilities Education Act, the law that governs special education services in the United States, requires that local schools identify and serve children with disabilities eligible for special education through a similar program known as Child find. However, in all too many cases, children with a variety of disabilities are left behind, with the burden of care left to family members who are often unable to meet even the child's basic needs. In my own work serving children with Optic Nerve Hypoplasia, I have found that many children whose families have reached out to me are not in the custody of either of their parents, with the bulk of these children cared for by maternal or paternal grandparents who are often aging and facing their own health and economic difficulties.

The system for caring for children with special needs and disabilities is typically reactive, rather than proactive--with responsibility for coordinating services left to overwhelmed case managers in underfunded agencies. While highly specialized services such as care management and therapeutic foster care for children with significant health conditions and disabilities exist, these services are only available to a handful of children already identified as the most complex in the child welfare system. These children have, metaphorically speaking, already been found by child welfare agencies after being left by the side of the road in the pouring rain.

Raising children with special needs and disabilities is a community responsibility. Children with and without disabilities have the best outcomes when they have close connections to their communities. Children without disabilities are typically involved in a variety of activities, such as sports, church, vacations with friends and family, and community service organizations such as Boy and Girl Scouts. Consumer organizations for people with disabilities, such as the National Federation of the Blind, also offer specific activities and programs that provide recreation, socialization, educational enrichment, and critical life skills training in areas such as Braille, travel skills and use of assistive technology through a network of local and state chapters and affiliates, divisions, and national training centers for blind youth and adults. Many of these organizations assist members of their communities and their families in crisis and provide needed emotional and instrumental support.

 

Many children with more significant or multiple developmental disabilities, however, do not have the opportunity to take part in such activities. Their lives, and those of their families, revolve around specialized therapies, doctors, and various interventions from specialized agencies from workers paid to serve them—often without involvement in the lives of the children they serve. If someone in the life of Heather Nicole Adkins had been able to intervene, might her Autistic son not have been abandoned? If the full range of supports had been available to her family and members of the community were able to care for her children, would her Autistic son have needed to wander the streets alone in the rain?

The isolated, dead-end street on which Heather Nicole Adkins' son was left to fend for himself on a dark and rainy Thursday night is emblematic of the plight of many children and families with developmental disabilities caught up in today's web of health care, educational, and social service providers. In the case of Heather Nicole Adkins's son, someone did intervene.

A man, identified as Ron Reese in a local news report from the following week, upon seeing the boy, took him into his vehicle, shared part of a meal with him, called 9-1-1, and did his best to comfort the boy until police arrived on the scene. "He placed me and a little guy in each other's paths— to let him know and show him that it's a brighter day," Reese said.

Photo of intersection where boy was found, taken by Christopher and Joan Sabine on the afternoon of February 27 2022


Sincerely,

Christopher Sabine

President
ONH Consulting, LLC

Sections: Adult Perspectives