Guidelines issued by the American Academy of Pediatrics say that all children should get health maintenance visits for immunizations and other preventive services; management of acute and chronic medical conditions; access to mental health support and dental care; and have round-the-clock availability of emergency services and timely access to subspecialists.
While Medicaid and many private insurance plans recommend or require that all of those services be provided, under the umbrella of what is known as the medical home, the study found that millions of insured children are not receiving many of the benefits.
There are many children with insurance who cannot get primary care and those who can often have problems getting specialty care.
As President-elect Donald J. Trump, a Republican, vows to repeal some, if not all, of the Affordable Care Act, which extended health care coverage to an additional 20 million people, the report’s authors worry that even more children could have trouble receiving the care they need.
“The fact that more than 20 million children in the U.S. experience insurance and noninsurance barriers to getting comprehensive and timely health care is a challenge that needs to get the highest-priority attention from the new administration,” said the report’s lead author, Dr. Irwin Redlener, president of the nonprofit Children’s Health Fund and a professor of pediatrics and health policy and management at Columbia University.
Over the past two decades, the number of children without health insurance has steadily decreased to 3.3 million last year from around 10 million in 1997, according to an analysis of federal data and the federal government’s 2015 National Health Interview Survey.
The effort to extend coverage began 50 years ago with the creation of Medicaid, which provides health insurance for the poor. It continued more recently with the Children’s Health Insurance Program, which offers low-cost coverage to those who make too much money to qualify for Medicaid and, under the Obama administration, with the Affordable Care Act, offering subsidized coverage and state exchanges.
The study relied on census data and reports by federal agencies like the Centers for Disease Control and Prevention, prominent medical journals, as well as information extrapolated from the fund’s clinics and from its national network of programs that provide health care to underserved children across the country.
The findings reveal a system in which getting quality care is often confusing and expensive, with even those who benefit from government programs often becoming deeply frustrated.
For the insured, affordability is still an issue. The report noted that employer-based health insurance premiums for family coverage increased by 73 percent from 2003 to 2013. Employees’ contributions to the cost of the premiums climbed by 93 percent over that same period, though the rate of increase slowed after the passage of the Affordable Care Act in 2010. The average deductible for an individual with health insurance was 5 percent of median income in 2013, up from 2 percent in 2003, the report said.
The study also cited a survey that found that 59 percent of pediatricians said they had a hard time collecting patients’ shares of deductibles and co-payments from families covered by private high-deductible health plans.
For those with Medicaid, like Ms. Solomon, difficulties in getting care have also grown.
Many clinics and health systems do not accept patients with Medicaid, the study said, because of the low reimbursement rates.
Ms. Solomon’s experience is typical.
“When I was pregnant with my last child, I had such a hard time finding prenatal care,” she said. She called 15 to 20 doctors before finding one who took her insurance. “I mean, we would call places and they would be like, ‘We take it,’ but it turned out they didn’t,” she said. “It was so hard.”
Even something as simple as getting medicine recently for her son’s strep throat was not simple. Because of a mix-up with her insurance card, Ms. Solomon had to cover a $20 co-payment for a prescription that should have been free, she said.
The report said experiences like hers were common, both with government programs and some private insurers.
“The impacts of these barriers are significant,” the report said. “Parents faced with financial barriers might seek to save money by calling their doctor for advice, rather than seeing that doctor in person; rather than fill expensive prescriptions, a parent might rely on a limited supply of pharmaceutical samples. The medical debt incurred by such costs has been linked to reduced access to care, creating a vicious cycle.”
Perhaps just as significant are the barriers caused by demographics.
Dr. Michael Kappy, a pediatric endocrinologist at Children’s Hospital Colorado just outside Denver, has seen the problem firsthand.
Since 1996, he has traveled in Colorado, Montana and Wyoming to reach children in areas that do not have large medical centers or specialists.
“My focus has been strictly speaking to solving the geographic barrier,” Dr. Kappy said.
The study estimates that around 14 million children live in areas with a shortage of health professionals. More than three million low-income residents in New York live in federally designated shortage areas where, among other criteria, there is less than one primary care doctor for every 3,000 people.
The Affordable Care Act sought to address that problem by expanding the National Health Service Corps, but 65 percent of rural areas still have shortages of health professionals.
Dr. Kappy said one encouraging trend was the use of telemedicine, allowing for patients to be evaluated over the internet, with a local physician assistant aiding with hands-on work. To expand and improve tele-health options, however, the programs need to be properly reimbursed, he said, adding that programs that fund the work of doctors doing outreach to isolated communities were critical.
Dr. Redlener, the study’s chief author, warned that repealing the Affordable Care Act without an adequate replacement could result in more than three million children losing their insurance.
“So far,” Dr. Redlener said, “none of the proposed replacements will do anything to mitigate what children would potentially lose if the A.C.A. is actually repealed.”