[Ohio-Talk] This is a Good Read • Cincinnati.com The Enquirer: Raising Children with Disabilities is a Community Responsibility – Note: Opinion

[Eric Duffy]

Raising Children with Disabilities is a Community Responsibility – Note: Opinion
Christopher Sabine, 10-20-22
 
https://www.cincinnati.com/story/opinion/contributors/2022/10/21/opinion-raising-children-with-disabilities-is-a-community-responsibility/69571939007/ <https://gcc02.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.cincinnati.com%2Fstory%2Fopinion%2Fcontributors%2F2022%2F10%2F21%2Fopinion-raising-children-with-disabilities-is-a-community-responsibility%2F69571939007%2F&data=05%7C01%7CMichael.Graham%40ood.ohio.gov%7C82f4fe757d2645f0daad08dab368c101%7C50f8fcc494d84f0784eb36ed57c7c8a2%7C0%7C0%7C638019559846172933%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=12SO3ggXfZnX%2BcwLi6D5f4PE6reMyEvKMYYn4MVVId4%3D&reserved=0>
 
The evening of Feb. 17 was dark, cold and rainy in the western suburbs of Cincinnati. At an isolated intersection, motorists spotted a 5-year-old boy wandering alone in the rain. According to media reports, the boy, who was nonverbal, was soaking wet and attempting to flag down cars in a desperate plea for help.
 
The boy's mother, Heather Nicole Adkins, later located 75 miles away, was arrested and charged with felony child endangerment and kidnapping. After pleading guilty to a lesser charge, Adkins was sentenced to six months in an alternative treatment facility and three years probation.
 
Media reports revealed that the boy is autistic and lived with his mother and two other boys, neither of whom have disabilities. According to accounts from a childhood friend, Adkins was high when she dropped the two other boys off at her friend’s home in Tennessee that afternoon, asking her friend to care for them. The boy with autism was not with them.
Adkins story is not unique. Raising and caring for a child with special needs and disabilities can be overwhelming for even the most resilient and resourceful families.
 
Many children and adults with disabilities require myriad services for their basic physical and emotional needs and to function at school and in the community. These include physical and occupational therapy, behavior management and curriculum modifications. 
 
Professionals from a wide variety of disciplines generally provide these services through an often-disjointed patchwork of private and public agencies. Coordination among these providers is often limited to nonexistent. Many critical services are not covered by private insurance, requiring families to incur thousands in out-of-pocket expenses. In some extreme cases, insurance carriers have encouraged families to relinquish custody of their children to child welfare agencies to allow their children to meet their most basic needs.
 
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 cited a lack of coordination among the various state and private agencies in charge of caring for children with complex needs and a lack of consequences for state agencies failing to provide legally mandated services as reasons for placement in the custody of the state’s child welfare agency.
 
Worse is the stigma that family members of many children with disabilities often face, particularly mothers.
 
In the 1940s, 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, 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.
 
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 significant disabilities, particularly autism.
 
It is no wonder that some mothers are compelled to abandon or give up custody of their children, especially those already at risk. Those who do so often face the harshest consequences. In Ohio, for example, child abandonment is considered ground for termination of parental rights. Unless the child is an infant, a parent like 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. 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.
 
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 for children with significant 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, been 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.
 
Many children with significant 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 interventions from specialized agencies.
 
If someone in the life of 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, would her autistic son have been left to wander the streets alone in the rain?
 
The isolated street on which Adkins' son was left to fend for himself on a dark and rainy Thursday night is emblematic of the plight of many children with significant disabilities. In his case, however, someone did intervene.
 
A man, identified as Ron Reese in a local news report, took the boy into his vehicle, shared a meal with him, called 911, and comforted 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.