Christie Riehl has been navigating Oregon's healthcare bureaucracy for years now, using what she called "polite persistence" to get coverage for her daughter's dual diagnosis of developmental disability and autism.
She has persisted to get an accurate diagnosis of Elie Riehl's issues and for coverage of unconventional treatments, ongoing services, comprehensive care coordination and for what she considers basic justice and fair treatment.
"Due to the lack of necessary cooperation and collaboration between [state] agencies, my daughter has fallen between the gaps over and over again," she said. "I don't accept 'no' when it comes to the life-saving treatment my daughter needs."
During this process, Riehl has also insisted on meeting with the directors of the Oregon Department of Human Services (DHS) and the Oregon Health Authority (OHA), while negotiations with agency staff continue over coverage for Elie's care.
Search for a diagnosis
Riehl and her husband, Eric, had trouble getting Elie's condition diagnosed when she began having infantile spasms at five months. The family's pediatrician missed the symptoms at three months, Riehl said, and it took a pediatric neurologist at UCLA to start filling in the picture.
Elie was enrolled in a drug study at UCLA and participated for eight months with no positive results, her mother recalled. Riehl then learned that high doses of Vitamin B6 had been successfully used in Japan for treating infantile spasms, and pursued that treatment for her daughter.
"She did respond to Vitamin B6, and within three days her seizures were gone and she hasn't had one since," Riehl noted.
When Elie was five, the family moved from southern California to Oregon. At the time, she was labeled as having an "intellectual disability," although her mother said there are doubts about that now.
"She was diagnosed with autism. She did respond well to visual cues and schedules. She has never talked but uses pictures. One of the experts who has worked with her for a long time says there is a very good possibility that she doesn't have an intellectual disability," Riehl said.
At age 8, Elie began exhibiting self-injurious behavior, hitting herself sometimes more than 100 times per hour, and had to be wrapped in blankets to avoid hurting herself.
"With Elie, there's something in the brain that makes her do this, but she doesn't want to," her mother explained. "She's very complicated and it's very rare. It's a brain chemistry issue."
Obstacles pile up
While the Riehl family has primary insurance coverage through Providence Health Plan, secondary coverage is through OHA as the state's Medicaid agency. That's because Elie meets certain criteria for developmental disability coverage under Oregon's specialized Medicaid waiver.
Riehl described a variety of problems in getting her daughter's treatment and ongoing care covered by the state agencies, which include:
- Not enough medical specialists
- Confusing documentation requirements
- Denial of travel expense reimbursements
- Unilateral administrative hearing process
- Lack of communication and care coordination
Riehl said OHA has failed to find specialized medical personnel able to treat dual-diagnosis cases such as her daughter's.
"They are not taking steps to find these experts," she said. "That's been left to us, and we've had to tell them there is no one. We're having to do all that work, and they're not doing any of the case management."
Documentation has been another sticking point. Riehl said OHA policy is to deny services because "insufficient medical evidence has been submitted" but hasn’t explained what it would consider sufficient.
At one point, Riehl requested her daughter's entire OHA file, which contained "significant gaps," and no one from OHA has responded to her requests for the entire record.
Riehl wanted the record to prepare for a recent Medicaid hearing after OHA denied what she called "necessary inpatient treatment" for her daughter. However, even if such a hearing were to uphold a family's request, that doesn't mean the agency would follow the judge's order.
"I have since learned that OHA also refuses to accept Administrative Law Judge orders a good 60 percent of the time in contrast to the DHS rate of around 10 percent," Riehl said. OHA also canceled a hearing, only notifying the Riehls three days in advance, leaving them with little recourse.
Communication was further complicated after Ellen Pinney, the OHA ombudsperson, was told by agency colleagues to stop responding to Riehl about her daughter's case.
That became apparent in emails sent by Pinney to Rhonda Busek, deputy director of OHA's Medicaid programs, and Suzanne Hoffman, then OHA interim director, on March 24, 2015: "As per your requests, I am not replying to the Mom of this member."
OHA's response
Several attempts by The Lund Report to talk to OHA Director Lynne Saxton about Riehl's concerns were unsuccessful. Instead, spokeswoman Alissa Robbins said OHA was "unable to speak to any [Oregon Health Plan] member's specific situation."
However, Robbins did respond to a list of general questions about OHA services, goals and plans.
At a series of town hall meetings held last year, Oregonians told Saxton and Sen. Sara Gelser (D-Corvallis) there were not enough specialty services for children.
"There is a provider shortage resulting in long wait times and not enough specialty services for children," according to Robbins' response. "Service integration is insufficient to ensure that cross-agency and inter-agency communication happens. Housing, employment, and transportation are in short supply. Consumers do not receive the quality, coordinated care and support they deserve."
Robbins denied the documentation and paperwork problems cited by Riehl, stating, "We have not seen evidence that documentation has been an issue."
She added, "Providers provide all supporting documentation for services requests. Appeal information is available through the member’s [Coordinated Care Organization] customer service. If the member requests an administrative hearing, they will be contacted by a Hearing Representative who will explain the hearings process and answer any questions related to the denial.”
Jeff Sneddon, program manager for Linn County Developmental Disabilities, did not return repeated phone calls from The Lund Report asking for comment on county/state coordination regarding Elie Riehl's care.
Riehl said the Linn County program receives funding from DHS for residential and support services for her daughter and its staff function as her case managers. "They have been strong advocates for Elie, and I don't know what we would do without them.”
Payment problems
Elie was successfully treated twice with applied behavior analysis at the Kennedy Krieger Institute at Johns Hopkins Children's Center in Baltimore. While Providence eventually covered some of those expenses, they were initially denied, appeals were exhausted, and OHA refused to pick up the tab after promising to do so.
By the time Elie was ready to come home from Baltimore last June, the family was desperate because they had no safe place for her to go.
"I had to email directors at DHS and OHA and say if you don't meet with us, we are going to be forced to go to the media and explain that these two agencies are forcing us to abandon our daughter," Riehl recalled.
The agencies responded within one day, and OHA paid for 25 days in July for Elie to stay at Kennedy Krieger so the
Riehls could get services for her in Oregon. However, some treatment dates still remain unpaid,
"OHA has been so disingenuous with Kennedy that I have been told by Johns Hopkins that they will never contract with Oregon Medicaid again,” she added.
Becky Melvin, director of communications at Kennedy Krieger, confirmed that, "At this time we are no longer an enrolled provider with the Oregon Medical Assistance program."
Initially, OHA paid for Riehl to fly every three weeks to visit her daughter and she was able to purchase advance round-trip tickets for $150.
“Later they wouldn't let me purchase tickets in advance and be reimbursed," she said. "Even though DHS and OHA report directly to the governor, because OHA is the Medicaid entity, they can tell DHS that we don't have to approve the travel. So how is Elie supposed to get to her treatments? We've had to pay for it all."
(The family launched a "Team Elie" GoFundMe campaign in April 2015 which raised $25,000 to help cover her specialized treatment. There is also a Team Elie Facebook page.)
Wrangling over transportation costs and agency care gaps has taken a personal toll, Riehl said. "It had an immense impact on our family. My husband lost 50 pounds, and in the middle of all this, I had cancer. It was crazy. The most frustrating part was this lack of coordination."
Riehl complimented Senate President Peter Courtney's office for its help with Elie's situation, saying he’s done more than the governor’s Constituent Services Office, which merely refers calls to the state agency in question.
Legal recourse
Frustrated by the ongoing transportation reimbursement problem, which has cost their family $12,000, Riehl consulted with Gregory Chaimov of Davis Wright Tremaine, who previously advised the Oregon Legislature on legal matters.
Chaimov filed a petition for Judicial Review with the Oregon Court of Appeals on May 12 after OHA denied Riehl’s request for an additional attendant to assist her daughter during travel for out-of-state treatment.
"There's an Oregon law that says when you're dealing with an individual with disabilities, DHS takes the lead role and other agencies are to coordinate with them. There are also administrative rules that say DHS's determination of the daily living needs of an individual with disability are the state's determination for Medicaid purposes,” he told The Lund Report.
"The Health Authority takes the position that under federal law the Health Authority is the only state agency authorized to make decisions about who gets covered for various services and that therefore, despite DHS having said three attendants are necessary for care, the Health Authority has determined that three attendants are not necessary and therefore will not provide the third attendant," he added.
Chaimov said OHA made this determination despite letters from three doctors and testimony from attendants who have transported Elie Riehl to Salt Lake City for specialized care.
Wraparound Initiatives
The problems Riehl described seem to persist despite a state statute that requires agencies to coordinate care for children who have behavioral, emotional or substance use-related needs.
"[T]his initiative is also meant to assure that individuals with mental health diagnoses (autism among others) receive wraparound services from all responsible state agencies and contracted entities that will meet individual needs and result in better outcomes," Riehl said.
Other states — New Jersey and Maine — have realized Medicaid cost savings using the wraparound approach, as noted in a presentation by Bill Bouska, former manager of OHA's Children Mental Health System.
Lingering questions
Several unanswered questions remain regarding the Riehl family's situation. For example, why has OHS refused to contract with specialists who could treat dual-diagnosis youth such as Elie Riehl here in Oregon rather than spending thousands of taxpayer dollars to transport them out of state for treatment?
Why are families left trying to negotiate a maze-like bureaucracy by themselves, spending their own time and money, to get mandated services for their disabled children? And, why should these families have to do so when Oregon statute requires agencies to coordinate care for youth who need specialized healthcare services?
Chaimov said he hasn’t had any cases similar to the Riehl’s.
"There are few people who are as persistent in their insistence on their child's obtaining the rights that the child is due as Christie Riehl," he said. "Most people would have given up and gone away a long time ago, and it's only because she has been so persistent in her insistence that Elie get the care she's owed that these issues are at a point where the public can see them."
From outward appearances, he said, OHA appears to act in a high-handed manner.
"In my experience they have tried hard to do a very, very difficult job, and there have certainly been situations in which they've made decisions that I think they lacked authority to make or were bad public policy, but I wouldn't attribute it to being autocratic," he said.
An uncertain future
Elie Riehl is now 18, living at home in South Salem and receiving care from a rotating team hired by her parents. While she seems happy, Elie is increasingly exhibiting self-injurious behavior, having had 30 such incidents a day after being discharged from Kennedy Krieger with that number now escalating to 260.
"We have 12-15 staff and are running a residential treatment facility in our home, in addition to continuing to work, be with our son and having people in our house 24/7," Riehl said.
She's hopeful Elie can attend a residential school in Massachusetts this summer for young people with autism and developmental disabilities. However, to cover the cost, it would require coordination by OHA, DHS and the Oregon Department of Education.
"If they can't reach agreement about how to meet these individual needs, then it has to go to the governor's office, and the governor's office would have to make a binding decision. I couldn't even get these agencies to agree that this policy existed," Riehl said.
Postscript
When Lynne Saxton was appointed OHA director by former Gov. John Kitzhaber in December 2014, she issued this statement:
"Oregonians have a right to quality, affordable healthcare and it is my mission to make that a reality. My commitment is to continue leading the agency and its dedicated team to produce results for all Oregonians. Those we serve deserve nothing less."
Christie Riehl has a similar view, albeit from a different perspective.
"My mission in sharing [our story] is to help move the system to more accountability in serving some of the individuals that are most vulnerable — something that I've been told by numerous advocates could significantly improve the lives of many other vulnerable Oregon citizens. I don't want anyone to go through this."
Cathy Siegner can be reached at [email protected].
