Seeking relief - Foster children and their allies sue the state over what treatments qualify as "medically necessary."

Mariah Miller’s headaches began when she was about 11 years old. She’s had them almost daily in the seven years since. She’s learned to cope. She drinks fruit juice and water to avoid dehydration, which she believes could trigger the next headache. She takes off-the-shelf pills containing acetaminophen or ibuprofen. Window shades and sunglasses help. So does meditative breathing. “You lay down and breathe deep to the count of four, and that helps you relax until it goes away,” Miller says.

Some headaches last a half hour. Others take their time and advance from Miller’s temples to the back of her head. The worst ones keep her inside for hours. She has to order her husband Jacob to stay quiet until the pain subsides. Inside Mariah’s head, quiet sounds such as Jacob typing on a laptop are amplified to a raucous clatter.

“During the headaches, everything sounds loud to me. I swear, pins dropping would sound like someone slamming a door,” she says.

Miller wants permanent relief. She’s a former foster child. Her birth mother told her from an early age she would get braces someday. Dentists said the same thing. After the state took her into custody as a teenager, foster parents and counselors said as much, too.

“When I was little I was always told that I was going to get braces, soon. I was going to get braces and it was going to help everything in my mouth get better,” she says. “People don’t think about eating corn-on-the-cob, but I when I was little that was a big thing. When you’re TMJ corn-on-the-cob sucks.”

TMJ is shorthand for tempo-mandibular joint. It’s the joint near the ear that connects the jawbone to the skull. It’s almost always on the move. It’s used to eat, smile and talk. Relax your face, and a pair of tempo-mandibular joints just moved.

There’s a bunch of TMJ disorders, and they have a handful of causes. Headaches are one symptom they all have in common. Some patients have ear pain. Other patients experience popping, clicking or even “lockjaw”—a mouth that gets stuck closed or half closed. That’s happened to Miller, who says she’s been warned by doctors to not force her jaw to unlock. Clicks and pops are a common experience. She’s learned that mild locking can be gently massaged away.

Last June, while Miller was 17 and still in foster care, an orthodontist recommended pulling three teeth from her over-crowded mouth. (Miller says she’s been told she has as many as eight “extra” teeth.) Her teeth would then be aligned with braces. The treatment would cost about $8,000. The state of Alaska Medicaid office paid for the diagnostic visit, but has not agreed to pay for the treatment.

Miller is now 18 years old, and still qualifies for Medicaid. Now, she’s suing the state for a treatment she says she should have started years ago.

The lawsuit claims the state is in violation of the federal Medicaid Act, which requires children to be provided with health care that is deemed “medically necessary.” A state regulation limits coverage for orthodontia to patients with “severe conditions” such as a cleft palate or “class III skeletal malformation”—conditions so severe they require both orthodontia and oral surgery.

The plaintiffs say that regulation is too strict. They’re asking Anchorage Superior Court Judge William Morse to toss the regulation, broadening the coverage the state would be required to provide. They also want a court-ordered outreach program to provide pre-screening for to all Medicaid recipients under the age of 21 to find out who qualifies for braces under a new description of medically necessary orthodontia.

The advocacy group Facing Foster Care in Alaska brought the lawsuit. In addition to Miller, one other Medicaid recipient is included as a plaintiff in the lawsuit. (In court documents, the two are identified only by their initials; Miller made herself available for interviews through FFCA.)

“We don’t cover orthodontia unless it’s medically necessary,” says Bill Streur, the deputy commissioner in charge of Medicaid at the Alaska Department of Health and Social Services. “In this case, the person did not get approved and rather than appealing it to the state, we got sued,” Streur says. Streur is named as a defendant in the lawsuit.

The Department of Law filed a response to the plaintiff’s complaint that reads like a laundry list of possible defenses for the state, then asks judge Morse to dismiss the case. The list is too all encompassing to hint at what the state’s defense might be should the case eventually go to trial.

The heart of the case rests on this question: does Alaska, through its regulations, routinely deny medically necessary orthodontia to Medicaid patients under 21? The plaintiffs point to the language in the regulations and say it does. The state denies that rejection of medically necessary claims is routine. Both sides have agreed to a trial date in September 2010, if the case gets that far.

Streur says the lawsuit could have been avoided if the defendants had pursued administrative appeals. “It appears that they did not (appeal the decision). We couldn’t find the paperwork to show that they did,” Streur says. “If it had come to me, I think I would’ve been able to resolve it. That didn’t happen, and now I am stuck with the consequences.”

Neither side knows how much it would cost the state to loosen the regulations and provide braces for more Medicaid-eligible children. Both sides acknowledge the case isn’t just about youth in foster care. The lawsuit seeks to change the standard for medical necessity for orthodontia among all Medicaid-eligible children, most of whom are from families that qualify because they are poor.

The numbers for Medicaid in Alaska are mind-boggling: 6,295,702 claims during the 2008 fiscal year; $943 million spent in fiscal year 2008 with a 51-49 split between federal and state funds; Nearly 125,000 Alaskans qualify for Medicaid and about 115,000 receive Medicaid-funded services. In 2009 the federal contribution to Medicaid will be 60 percent, because of the federal government’s wide-ranging economic stimulus funding. (All of these numbers from Alaska Department of Health and Social Services.)

Streuer provided some additional numbers about services Alaska Medicaid provides to people under 21. The program insures 51,880 minors at a cost of about $224 million. It spends $58.6 million of that total on children in state custody. (The Medicaid numbers from Streur show 4,564 children in state custody throughout the course of the year. The state Office of Child Services web site says 1,500 are in foster care “on any given day.”)

Nikole Nelson, the lead attorney at the Anchorage office of the nonprofit Alaska Legal Services, represents FFCA and the two people suing to get braces. Nelson says the reason her plaintiffs did not pursue administrative appeals is that they knew the claim would be rejected. “The administrative appeal would have been rejected. Then we would have appealed to the court, which is where we are now,” Nelson says.

The case is not about individual bureaucrats denying individual claims, Nelson says. The regulation itself is at issue. Nelson’s research shows the regulation goes back to the 1980s and was re-adopted in 1996, but has changed little since. “They knew what they were doing when they did it; it was an attempt to ration orthodontia,” she says.

She says the state’s court filings so far appear to be stalling tactics. No settlements have been discussed.

“Essentially what they are doing right now is trying to stall the case and establish procedure hurdles so that the case will not be heard. They have not yet attacked the case on its merits,” she says. “If you’re they state, and you’re charged with making good decisions based on the law, why would you stall? Especially when what we are talking about is health care for children who the state is supposed to be taking care of.”

Mariah Miller was the second teenager to live in Dianna Wooten’s home as a foster child. Wooten has five sons of her own. Two are still boys and in school. She’s currently a bookkeeper who keeps office in her house, but in the past she was a “family teacher” at a youth shelter in Kenai—a job she describes as “teaching life skills” to teenagers. She’s taken in just one foster child at a time, and says she includes her own children in the decision.

“With teenagers when they are in foster care, they really need a lot of help,” Wooten says. “The kids struggle with it, but I try to teach them that there is nothing wrong with learning to take care of yourself.”

Mariah moved into the Wooten household for about 12 months, and left after her eighteenth birthday. Wooten knew her foster daughter was independent-minded. She also knew about Mariah’s problems with her teeth. The two didn’t always agree about Mariah’s headaches.

“I don’t think they were debilitating to the point where she couldn’t function,” Wooten says. “She might think that, but from a parenting perspective it’s different. Headaches are one of those things you can’t see. We all have headaches and things we can’t control or get rid of. I guess I was just helping her to manage them.”

Wooten supports Mariah’s beef with the state. “If it’s causing the joint in your jaw to deteriorate—that’s an issue. It’s not just a matter of looking good; it’s a matter of not being able to open your mouth,” she says. Wooten thinks the braces should’ve been paid for. The diagnosis from an orthodontist reinforced that in Wooten’s mind.

“I don’t think she knows,” Mariah says when asked about her foster mom’s description of the headaches.

Maybe no one can know another person’s headache. Mariah Miller recalls her own in vivid detail.

“It starts below my ears and goes up into my temples,” she says. “It goes from my temples to my eyes and to the back of my head. It s feels like molten lava going through my head. Then I get a low ringing in my ears. It’s low pitched.” The sensitivity to light and sound drives her into bed, where she waits the headache out with shades drawn and the door closed.

The lawsuit is a new and untested strategy from Facing Foster Care in Alaska, a youth-led organization founded in 2003. The organization’s members include youth in foster care, alumni who have aged-out of the system and adults the group calls “allies.” (Some politicians can be counted among the allies, and some attorneys, called “guardians ad litem” or “GALs” who are appointed to represent the interests of children in court.)

The FFCA often works in cooperation with OCS. And they lobby, taking foster children to testify to the Alaska Legislature about living in state custody. They even seek assistance in the private sector, most recently with a program called “Fosterwear” in which clothing stores provide discounts to foster families, a program OCS manages but which FFCA started.

Braces have been on the FFCA agenda for years, but the group’s state wide coordinator Amanda Metivier says the lawsuit isn’t something the FFCA planned on its own. She says it has its genesis in conversations with attorneys who had experience with the Medicaid regulations.

“I don’t think we predicted (the lawsuit), it just sort of happened. Our youth were being denied braces, and then Alaska Legal Services found that it was happening routinely… there was support from some of the GALs, too.”

The lawsuit is meant to raise the bar for Alaska Medicaid, Metivier says: “It so not just ‘most basic medical needs’ are met, but so that all medical needs are met.”

Nelson says foster care youth and their advocates brought the Medicaid issue to the attention of her nonprofit law offices. “But it has ramifications for all Medicaid-eligible children,” she says. “I do think that foster children have incredibly challenging lives, whether it be at home or in the foster care system. But having said that, I think it should be across the board that once the state has taken them into custody, the state has to take care of them. It has an obligation to do so.”