"This is a big improvement, but we should emphasize that it's not totally fixed," Clemans-Cope says. "And people are really going to have to get help to decide which plans cover the benefits they need. "
Whether a person will be able to get the new therapy benefits also depends on where they live. The level of benefits insurers have to provide in each category is based on a model policy in each state, and some of those model policies are a lot more generous than others.
Jill Tappert, an activist in Colorado for people with disabilities, says a lot of details still need to be sorted out before she'll be able to say whether the health care law has improved things much.
"I certainly hope the way the Affordable Care Act is implemented is a game changer for people in the disabilities community. It can be," says Tappert, who spent years fighting for habilitative service coverage for her daughter who has autism. "The opportunity is there for policy makers to vastly improve lives."
Barbara Vernon, Bryce's mother, says Bryce is now covered by Medi-Cal, California's Medicaid program. His primary insurance had been her employer-sponsored plan until she was laid off in 2009. She searched for private coverage for Bryce, but says, "Private was so unbelievably expensive, it was unaffordable."
Barbara says her family's insurance is "a patchwork," with Bryce likely to stay on Medi-Cal even after his 21st birthday. She and her other son have an individual plan they have purchased, and her husband has an employer-sponsored plan -- but it covers only the employee, not the family.
For his part, Bryce Vernon says his life is a lot better since getting the kind of help that many others may be able to get from the health law, starting in 2014. He works hard to get the most out of the technology and the therapy that lets him speak. His advice to others: "Never, ever give up."
The new rules for what health insurance companies have to cover may still change. Federal regulators plan to review them as the health law rolls out and could make changes in 2016.
This piece is part of a reporting partnership among NPR, Colorado Public Radio and Kaiser Health News.
Kaiser Health News is an editorially independent program of the Henry J. Kaiser Family Foundation, a nonprofit, nonpartisan health policy research and communications organization not affiliated with Kaiser Permanente.
Fri, Aug 09 2013