Poverty is on the rise, as is the number of children with mental disorders, although many of the children with these disorders who may qualify for federal benefits aren’t receiving them, according to a new report released by the Institute of Medicine (IOM). The IOM report, released September 9, compares national trends in the number of children with mental disorders under 18 to trends in the Supplemental Security Income (SSI) childhood disability population.
Since 1975, the Social Security Administration (SSA) has paid benefits to poor children through the SSI program. In 2013, approximately 1.3 million children received SSI benefits. Approximately 50 percent of those recipients had disabilities primarily due to a mental disorder.
According to the report, “Mental Disorders and Disabilities Among Low-Income Children,” an increase in the number of children who were recipients of SSI benefits due to mental disorders has been observed from 1985 to 2010. Less than 1 percent of children in the United States are recipients of SSI benefits for a mental disorder.
“There has been an increase in the number of children who receive Supplemental Security Income from the Social Security Administration,” Amy Houtrow, M.D., Ph.D., MPH, associate professor and vice chair in the Department of Physical Medicine and Rehabilitation Division for Pediatric Rehabilitation Medicine at the University of Pittsburgh School of Medicine, told MHW. The study was conducted to determine the reason for the increase, said Houtrow, IOM committee member and coauthor of the report.
“One of the reasons the report happened is because Congress was questioning the appropriateness of the SSI program,” said Houtrow. “It’s important to identify children who are disabled and need support and financial assistance to help lift them out of poverty. It tells the value of the program.”
The IOM committee selected to conduct the report looked at 10 years of data for mental health and reviewed national trends and trending using Medicaid data. They also reviewed trends in childhood disability attributed to10 major mental disorders: attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorder (ASD), intellectual disability (ID), mood disorders (depression and bipolar disorder), learning disorder, organic mental disorders, oppositional defiant disorders, conduct disorders, anxiety-related disorders and borderline intellectual function.
While the number of children allowed SSI benefits for mental disorders has fluctuated from year to year between 2004 and 2013, over the 10-year period, the percentage of poor children who are allowed SSI benefits for mental disorders has decreased, according to the study.
“There is likely a large group of children who would qualify for benefits but are not receiving them,” said Houtrow. “Lots of families in poverty might not have access to health care services or have knowledge about SSI benefits.”
The study found that in 2013, approximately 1.8 percent of U.S. children (ages 0–18) were recipients of SSI benefits — an increase from 1.3 percent in 2004. The percentage of all U.S. children who were recipients of SSI disability benefits for the 10 major mental disorders grew from 0.74 percent in 2004 to 0.89 percent in 2013.
The proportion of children whose applications were allowed annually for the 10 major mental disorders out of all allowances for children did not increase. Approximately one-half of all allowances for child disability benefits were for the 10 major mental disorders.
According to the study, trends in the number and proportion of allowances and recipients varied by type of mental disorder. Some diagnoses, such as ASD, showed substantial increases over the period. Some, such as ID, showed considerable decreases. For each year from 2004 to 2013, the ADHD category was largest in terms of numbers and proportions of child SSI disability allowances and recipients.
The trend in child poverty was a major factor affecting trends observed in the SSI program for children with mental disorders during the study period. Increases in the numbers of children applying for and receiving SSI benefits on the basis of mental health diagnoses are strongly tied to increasing rates of childhood poverty because more children with mental health disorders become financially eligible for the program when poverty rates increase.
The committee concluded that better data about diagnoses, comorbidities, severity of impairment and treatment, with a focus on trends in these characteristics, is necessary to inform improvement to the SSI program for children.
“There is a large reservoir of children who would likely qualify for benefits and who are not receiving the benefit,” Houtrow said. “We know that poverty is on the rise among children. We know that disabilities are on the rise among children. The big message is to help identify children who may be eligible so parents can apply for the benefit.”
She noted that one-half of children who receive SSI get pulled out of poverty. “That’s a huge thing,” Houtrow said. “It allows parents to provide for the care and well-being of their child with a disability. They receive cash assistance, which can help mitigate food insecurity, for example. It’s important to their well-being and growth.”
Receiving the SSI benefit gives children an opportunity to receive Medicaid, providing them with much better access to mental health services, said Houtrow. For the children who didn’t have insurance before, Medicaid is a big benefit, she said. The children will also get referred to another benefit: their state Title V program, targeted toward children with special needs.
“The job of the whole system is to try to help families make the first step toward the application process if they might be eligible,” said Houtrow. From a policy perspective, it’s important to continue to acknowledge the benefits of the program for children and families.
Some mental health conditions are severe enough to negatively impact children in their day-to-day functioning, said Houtrow. “Providers should recognize this and attempt to manage it but also understand that for children living in poverty who have mental health conditions associated with poor functioning, those children may be eligible for SSI,” she said.
For poor children with severe mental health problems associated with disabilities, providers should alert parents of the possibility of benefits, Houtrow said. “This is because there are a lot of benefits from being lifted out of poverty,” she said, noting that not all children who apply will receive the benefit. “It’s hard to qualify, and there’s a strict set of criteria,” she said.
Health care providers, including case managers, social workers, pediatricians and mental health providers may lack the knowledge for helping families know where to look and to point them in the right direction. “Lots of health care providers may not even know about the SSI program,” Houtrow said.
The determination process includes the review of medical records and the gathering of information from schools, clinics and hospitals, said Houtrow. “Making sure you document thoroughly how the child’s life is impacted and what conditions the child has will help with the determination process,” she said.
Only the primary code is used when reviewing SSI data because only the primary code must be filled in on the forms. Therefore, although a lot of children have a primary code of ADHD, they might also have other problems that are not coded.
Children with mental retardation (now referred to as intellectually disabled) are very likely to qualify for SSI if they also meet the income eligibility criteria, said Houtrow. More than 90 percent qualify, she said. “Autism and intellectual disability nearly all qualify for financing,” she added. “Autism and ID are associated with significant disabilities most of the time, so more of those kids qualify.”
The report doesn’t point out why children who may qualify aren’t applying for the benefit, she explained. The next thing for the health care system to do is determine what it can do to help identify children in need of the benefits and ensure they receive services, said Houtrow.
For a copy of “Mental Disorders and Disabilities Among Low-Income Children,” visit http://iom.nationalacademies.org.
Mental health providers can help identify children in need of benefits and ensure they receive services.
Quality diagnosis essential in identifying children for federal benefits
“If a parent doesn’t leave the doctor’s office feeling sad, they probably haven’t given the doctors enough information about the extent of the child’s disability,” Bob Klaehn, M.D., who is on the faculty of the Maricopa Integrated Health System Child Psychiatry Fellowship Program in Mesa, Arizona, where he ensures that child psychiatrists in training have experience in diagnosing autism, told MHW.
“They have to talk about things that are very painful,” said Klaehn, who is not affiliated with the IOM’s “Mental Disorders and Disabilities Among Low-Income Children” report. “In order to get a full picture of the disability, it takes time. Not all doctors even have the time or ability to do that.”
The lack of expertise in the diagnosis of autism in most communities prevents many children with this diagnosis from getting SSI benefits, said Klaehn. “That’s one of the biggest barriers I’m aware of from my experience in state government,” he said. For example, the training requirements for child psychiatrists in the diagnosis of autism and other developmental disabilities is quite limited, said Klaehn “It’s surprising to me given the increasing prevalence of autism,” he said.
There has to be an easy way for busy doctors to provide information, said Klaehn, who said he hasn’t conducted SSI paperwork in years — which was a paper-and-pencil process back then that was often considered laborious. “We live in an age of electronic health records. By now the SSI process should be more electronically friendly. If you make it more user-friendly, more doctors would be able to complete the paperwork,” he said.
“It’s all based on access to diagnostic services,” said Klaehn. “There are still some inequities in terms of diagnoses in children.”