WASHINGTON -- As an exercise, Sara Rosenbaum, JD, a professor of health law and policy at the George Washington University School of Public Health, asked her students to help her shop online for a TV for her husband. She listed the specific features it should have.
"In 10 seconds, of course, they have come back having shopped at 51 websites with a panoply of offers," Rosenbaum said.
Then she asks her students to pretend she's a mother who has just moved to Washington and needs a health plan with "extra special" coverage for children with diabetes.
"I leave them alone for a half-hour, and they come back with nothing," she said.
Rosenbaum was one of several health policy experts, providers, and children's advocates who spoke about rethinking the design, benefits, and networks offered under the Affordable Care Act at a panel during the National Children's Health Policy Conference on Wednesday.
One of the often lamented problems with the Affordable Care Act is that beneficiaries are often unclear about what's in their plans.
Mark Wietecha, executive director of the Children's Hospital Association, likened the experience of choosing a plan to a bad visit to a car dealership.
"You got a window sticker on your car that has a price, and you don't know what's in it," he said.
"Like, 'Does it have a radio?' Well, I can't tell you, but you can buy it and find out."
Although federal regulations have been proposed to update provider directories more frequently, consumers for now must struggle both to find out who is in a plan and what services they provide -- a particular problem for parents needing coverage for their children, and even more so when children have chronic conditions.
Network Adequacy
One perk of the Affordable Care Act is that for the first time there's a federal national standard for network adequacy, said Justin Giovannelli, JD, MPP, a research fellow and faculty member at Georgetown University's Health Policy Institute.
The standard, in more official terms, essentially requires an adequate mix of providers so that patients can access care without an unnecessary delay, Giovannelli said.
In addition to this qualitative federal standard, some states have tried to impose quantitative standards, such as requiring there to be a provider within 15 miles or 30 minutes of travel for beneficiaries. Another requirement might demand a set number of primary care physicians for every 2,000 beneficiaries, or a set amount of time for after-hours care.
"These quantitative standards potentially are positive, because they put some real concrete ways of evaluating networks, but they also are perhaps too restricting," Giovannelli said.
The variability in where a state's quantitative standards apply can differ, for example, between a health maintenance organization plan (HMO) and a preferred provider organization (PPO), he noted.
"You really have a situation where you have a mix of standards applying to a mix of plans, and it can be very confusing, certainly for consumers, to try to figure out what they're dealing with."
Essential Benefits
Another aspect of the Affordable Care Act that needs improvement, according to Kathleen Noonan, JD, founding co-director of the PolicyLab at Children's Hospital of Philadelphia, is standards for the essential benefits for children.
As the ACA was being drafted, the Institute of Medicine recommended preemptively setting a standard of essential benefits for children, she said. However, the Department of Health and Human Services chose a benchmark approach, allowing states to submit a benefits checklist that was similar to the typical employer plan in their area.
This resulted in dramatic variability of access to services for children. In other words, a child's access to something like speech therapy would depend on where he or she lived, according to a study Noonan, Rosenbaum, and several colleagues conducted.
Thirteen states excluded benefits for children with learning disabilities, and another 10 states expressly denied speech therapy for development delays or stuttering. Also, nine states at least partially excluded services for autism spectrum disorders.
And just because a state didn't explicitly exclude a benefit, doesn't mean it's included, Noonan said.
"We have a lot of silence and a lot of deference for payers and for states to really decide ... whether these service are going to be in or out."
Noonan noted several regulatory options that the Department of Health and Human Services Department could invoke if it chose. These included barring exclusions for pediatrics, implementing a "medical necessity" standard for pediatrics, and expanding pediatric benefits to the actuarial value of 90% of the platinum plan.
Lastly, Noonan recommended using CHIP plans as a benchmark for pediatric services elsewhere. CHIP plans offer more benefits than the essential health benefits offered by qualified health plans, she said.
CHIP Renewal
While it isn't part of the Affordable Care Act, the issue of whether to extend the Children's Health Insurance Program (CHIP), slated to expire in September 2015, emerged in nearly every discussion at the conference, with unanimous support for extension.
"Right now, there are so many issues to work out around quality health plans [on the exchanges] and kids, that we need some time," said Noonan.
She cited a study from Stanford University and First Focus, a child advocacy organization, that showed "lower costs and better health" for children using CHIP. The out-of-pocket costs for CHIP families was on average $97 compared with $926 for families on qualified health plans.
Cathy Caldwell, the CHIP director of the Alabama Department of Health, said costs for children on Medicaid in her state are half that of CHIP. She attributed this to utilization rates that were "less than half."
She said this was worrisome, because children typically don't receive many elective services. The drop in costs suggested they might be skimping on things like dental visits.
"That's not a good thing," she said. "We want them to get their preventive services."
Anne Schwartz, PhD, of the federal Medicaid and CHIP Payment and Access Commission (MACPAC), said that if CHIP funding ended, 1 million children would lose their insurance. She recommended eliminating premiums for those under 150% of the national poverty level.
Melinda Dutton, JD, a partner in the healthcare division at the Manatt Phelps & Phillips law firm, said, "I think it would be really tragic to dismantle CHIP before we have a very good sense of what we're replacing it with."
Another panelist, Patricia Riley, MS, director of the National Academy for State Health Policy and a commissioner for MACPAC, said that while there's a lot of support for extending CHIP, there needs to be more discussion around whether to continue renewing the program "forever" or to find an alternative path.
This begs a broader policy question, she said.
"Do you view public programs as the safety net ... or do you view public programs as transitioning to a financing mechanism into an employer-based system?"
She added later, "Until and unless we find ways to together attack the real question of cost in the healthcare system, we're really arguing at the margins to talk about whether it's CHIP, whether it's Medicaid, or whether it's employer sponsored health coverage."