(THE TENNESSEAN) When a Department of Children's Services caseworker first placed Jonathan in Janie Cunningham's arms, he was just 2 weeks old — a tiny thing, born three months premature — with a swirl of thick brown hair that seemed to swallow up his face.
The Cunninghams, who were foster parents, signed the adoption papers 16 months later. Jonathan was their fifth son, in a tight-knit and often boisterous family in Tullahoma.
But within months of his second birthday, Jonathan began to act strangely, staying up all night, kicking violently, crying inconsolably. He didn't learn to talk until he was 3.
By age 4, he had become violent. He punched his hand through a glass pane. He tried to jump out of moving cars and said he hoped a big yellow truck would run over him. He bit his mother, split her lip and broke her eyeglasses.
Janie and her husband, Kelly Cunningham, spent years visiting psychiatrists and therapists and nights holding Jonathan in a full body lock to prevent him from hurting himself. Janie quit her job. The couple scaled back to live off one income from Kelly's job as an auto mechanic. They exhausted their private health insurance, sold their house and, eventually, declared bankruptcy to pay Jonathan's medical bills.
"I thought, 'He's my baby.' I loved him regardless, and we said we would deal with whatever comes our way," Janie Cunningham said. "We would get him whatever help he needed. No one is ever guaranteed good physical or mental health."
Adoptive parents of children such as Jonathan are guaranteed financial help and health insurance under federal adoption rules for children born with special needs — benefits the Cunninghams say caseworkers with the Department of Children's Services specifically told them they could not receive when they adopted Jonathan.
It wasn't important to the couple at the time, Janie Cunningham said. They thought their son was healthy.
But the medical records the Cunninghams were later able to obtain from doctors at Vanderbilt University Medical Center showed that Jonathan was born with a host of well-documented problems — known to lead to psychological and physical impairments.
At birth, Jonathan tested positive for phenobarbital, methamphetamine, cocaine and marijuana, according to Vanderbilt University Medical Center records. His biological mother received no prenatal care, and she had admitted that her first cousin might be Jonathan's biological father. She had been hospitalized for schizophrenia, the records showed.
"DCS had access to all of Jon's records, knew his mother's history and, in fact, they knew more about Jon than the Cunninghams," said Cynthia Cheatham, an attorney for the couple. "At the time of the adoption, they should have sat them down and explained what adoption assistance was. They not only did not do that, they pretty much lied to them. DCS kept important information about a child from his parents."
When the Cunninghams turned to DCS staff for help when Jonathan was 4, they were told they could not qualify because Jonathan had been healthy when he was adopted — which would disqualify him according to the rules of the adoption assistance program. For parents to receive any aid, the program requires pre-existing conditions to be documented before the adoption.
"Jonathan was, obviously, a medically complex high-needs child from birth," his pediatrician, Dr. Clifford Seyler wrote in a letter to DCS earlier this year. The doctor said Jonathan's behaviors were a result of drug exposures and genetic factors present at birth, spelled out clearly in medical records DCS staff had been privy to since he was born.
A spokesman for DCS acknowledged the agency had erred when Jonathan was first adopted but said the agency has worked to "make it right" — and has implemented improvements in its adoption assistance program.
"Yes, we made a mistake approximately seven years ago when this case was initially approved," DCS spokesman Rob Johnson said.
"For the past few months, though, our staff has worked hard and faithfully to make it right," he said. "We believe the family has done great work on behalf of this child. By the same token, we respectfully take issue with their attorney's contention that DCS was deliberately untruthful.
"Our staff works very hard on behalf of DCS children, many of whom have incredibly complicated conditions, with effects that can unfold gradually over time. Our staff members know it is in everyone's best interests to secure for these children all of the assistance that is available to them. There is no advantage to our staff in preventing families from getting the funds to which they are entitled."
DCS attorneys last month agreed to a settlement with the Cunningham's for $79,000 in retroactive adoptive assistance after Cheatham threatened to file a lawsuit against the agency.
The agency also pledged to provide assistance going forward to help the couple with their expenses raising the now-9-year old boy, who is currently in a residential treatment facility near Knoxville.
He has been diagnosed with autism, bi-polar disorder, attention deficit hyperactivity disorder and disruptive behavior disorder, among other things. The adoption assistance also guarantees Jonathan TennCare insurance until he is an adult.
Much to overcome
Advocates for adoptive families of children with special needs say the Cunninghams' experience is not an isolated case.
For more than a decade, two class action lawsuits against Tennessee brought federal court oversight of the medical care provided to children in DCS custody and the information about a child's medical background that is passed along to foster parents and adoptive families.
The court oversight identified problems and forced systemwide improvements. In one lawsuit known as John B., overseers appointed by the court more than a decade ago found DCS was not getting children regular check-ups or proper medical or psychological care before placing kids with foster families or adoptive parents.
Monitors identified cases in which children with sickle cell anemia or HIV were placed with families uninformed about the children's medical conditions. That suit has since ended after the court found DCS has made significant improvements in the past 15 years.
In another ongoing lawsuit, known as Brian A., other court-appointed overseers noted the agency had made improvements in adoption assistance in recent years, including DCS' expansion of its criteria for identifying special-needs children and giving their families adoption assistance.
And Johnson, the DCS spokesman, said the agency will, effective January 2014, allow more children to be eligible for deferred adoption assistance and allow those children to be eligible for TennCare as soon as they are adopted.
But the case noted DCS has more work to do. Court-appointed monitors noted in a report released in June that they had found a "lack of knowledge among some families of the array of services and supports offered."
Michele Johnson, executive director of the Tennessee Justice Center, which filed the now-ended John B. class action lawsuit, said her agency has tried to assist nearly two dozen families adopting children from DCS custody in similar situations.
Johnson said she believes DCS caseworkers and staff are motivated to find good adoptive homes for children in their care, but that the agency has fallen down on the job of evaluating children's backgrounds and giving adoptive parents the guidance, support and financial assistance they need.
High caseloads, bureaucratic errors and pressures to get children adopted are all factors, Johnson said. The agency is under court order to meet annual benchmarks in getting children adopted out of state custody.
"What you would expect from DCS is a little more expertise and knowledge about what to anticipate in terms of levels of abuse or drug or alcohol abuse in utero," she said. "They should have the resources to know that a child who looks really cute at age 4 but who has been sexually abused or exposed in utero to cocaine, that chances of that child growing up and not needing any mental health care is nil."
Aid is available
A federal adoption assistance program was created by Congress in 1980 to encourage the adoption of special-needs children and remove the financial obstacles.
States can offer financial payments — a combination of federal grants and money from the DCS budget — to help families pay for therapy, transportation, in-home services, medications and other expenses associated with a child diagnosed with special needs at the time of the adoption.
There are about 4,500 families receiving an adoption assistance subsidy, according to DCS court-appointed monitors.
The agency offers similar financial assistance pre-adoption to foster care parents of children with medical or psychological problems.
Foster parents get a monthly stipend for any foster child. And DCS must provide a foster family of a child who is medically fragile full disclosure about the child's condition.
'He could have died'
Hoping to adopt, Josh and Tonya Graham became foster parents in 2007.
On a Tuesday evening in January 2010, a DCS caseworker brought 6-week-old Chase to the Graham home. She told them he had been in the hospital overnight with a virus, but he was otherwise healthy, Tonya Graham said.
The first night, they noticed his cries were barely audible. He had trouble eating.
Six days later, Chase couldn't keep his food down and the Grahams rushed him to Monroe Carell Jr. Children's Hospital at Vanderbilt.
They learned Chase already had a long medical history. Chase had been born addicted to benzodiazepine and cocaine. He had been in the intensive care unit between Dec. 29 and January 19. He had been on life support. And when he was discharged, doctors required him to go home with special bottles, special formula and an oxygen machine.
"None of that was relayed to us," Tonya Graham said. "We were told that he was a healthy baby. We learned little by little over time just how sick he was.
"We told DCS he could have died because of the information you did not give us. We kept asking DCS about him and it was played off like 'Do you want to give him back?' And, of course, we didn't want to give him back. We felt like he was ours. We just wanted to get the right information and the right help to give him what he needed."
DCS officials dispute the Graham's account, saying agency caseworkers were never told the family had concerns about a lack of medical equipment being brought to their home.
DCS spokesman Rob Johnson noted that after a series of hospitalizations nine months after being placed in the Graham's home, the child was properly qualified as "medically fragile."
The Grahams have adopted Chase. The couple was able to secure adoption assistance from DCS.
They remain in an ongoing dispute with DCS officials over retroactive pre-adoption foster care assistance for special needs children from the day Chase was placed in their home.
They are appealing DCS' decision to deny it.