Telemedicine – connecting health care providers and patients via computer or smart phone for diagnosis and treatment – has been making it easier, and more cost-effective, to “see” the doctor. Using a camera-enabled computer or smart phone, patients with common health concerns can get some diagnoses without leaving their homes. Emergency room doctors and nurses are able to communicate with their peers in larger trauma centers via computer, as well.
Now a new University of Iowa study, published recently in the journal Pediatrics, shows that parents with children on the autism spectrum are able to have a specialist address challenging behavior in these children by interacting over the computer, too – and at less than half of the cost of receiving similar care in person.
“A lot of kids who are on the autism spectrum have significant problems with behavior,” says Scott Lindgren, Ph.D., professor of pediatrics in the Stead Family Department of Pediatrics at University of Iowa Carver College of Medicine and lead author of the study. “These kids may have trouble following directions, or have problems when there are changes in their schedule or routine. They also don’t always have good enough communication skills to be able to explain to someone why they’re getting upset or having a meltdown.”
Parents are often frustrated, Lindgren says, because they don’t know how to communicate with their child to find a way to prevent or stop a meltdown. What adds to frustrations, he says, is that many Iowa families live in areas where services for children on the autism spectrum may be hard to come by.
“There are a limited number of professionals with the training and expertise needed to work with these children, which means a lot of families can’t get access to the services they need,” Lindgren says. “That’s the situation we have in Iowa.”
With the availability of telemedicine, he says, families with limited access – particularly those in rural settings – will be able to connect with their provider without causing a big disruption to their child or their family.
Additionally, the study showed that total costs for treating a child for challenging behaviors was cut from nearly $6,000 per child to just over $2,100 through the use of telemedicine – or telehealth, as it is often called. Cost savings were seen in various areas, including travel expenses and staff hours that were saved when no travel was involved.
In the study, Lindgren, who is co-director of the UI Children’s Hospital Autism Center, and David Wacker, Ph.D., professor of pediatrics in the Stead Family Department of Pediatrics at UI Carver College of Medicine, along with other UI colleagues, examined whether these families could be served by using telehealth to train parents to use applied behavior analysis (ABA), a common intervention for children with autism spectrum disorder (ASD).
The group studied 107 children ages 21 months to 6 years old with ASD or other developmental disabilities and who were treated between 1996 and 2014. The children were divided into three groups: 52 kids treated between 1996 and 2009 who had a behavior consultant come to their home; 23 children treated between 2009 and 2012 whose parents went to a clinic near their home to be coached via telehealth; and 32 children who were treated between 2012 and 2014 as part of a trial in which their parents were trained in functional communication training (FCT), a type of ABA treatment, via telehealth coaching at home.
Researchers found that not only are specialists able to successfully train parents to use ABA procedures using telehealth, and at a fraction of the cost, but they are also able to provide the training to families in outlying rural areas who might otherwise not have access to care.
“When we were starting to do this with telehealth a few years ago, a lot of people said there’s no way to work with children with autism without seeing them in person,” Lindgren says. “Usually the way they had been managed was that the family would come to the hospital and see Dr. Wacker and he’d evaluate the children.” Behavior analysts were then sent out to the home to work with the family, Lindgren says.
As telehealth services evolved, he says, families would go to one of 14 regional clinics around the state and be coached by a behavior consultant via an internet connection between the hospital and the local clinic. It saved families from having to drive to the hospital, but it still involved leaving the home and disrupting the child’s routine.
With the most recent approach of using in-home telehealth, parents and consultants could connect via a computer at home, which often gave consultants a glimpse into where the child was most comfortable and where most challenging behavior occurred. The parents would then receive coaching in functional communication training at home.
“This coaching is more than having a casual talk with families,” Lindgren says. “It’s setting up a variety of situations in which problem behavior may occur, and helping parents find ways to address problems constructively, and to better understand why that behavior is occurring. For 90 percent of the kids we evaluate, we can find a social reason for what that child is doing.”
Lindgren said he’s been pleased with the results of the consultations via telehealth – and so have been families.
“It’s been impressive to me to see how well this works in different settings,” he says. “Almost all of the parents do well enough in this training to be able to help their kids a lot. And that reduces stress on the family and helps kids succeed in school and in life.”
Other UI researchers involved in this study include Kelly Pelzel, Ph.D., Todd Kopelman, Ph.D., and John Lee, BA.
For Erin Moore, keeping her son’s cystic fibrosis in check requires careful monitoring to prevent the thick, sticky mucous his body produces from further damaging his lungs and digestive system. Moore keeps tabs on 6-year-old Drew’s weight, appetite, exercise and stools every day to see if they stray from his healthy baseline. When he develops a cough, she tracks that, too.
It’s been nearly a year since Drew has been hospitalized; as a baby he was admitted up to four times annually. Erin Moore credits her careful monitoring, aided by an online data tracking tool from a program at Cincinnati Children’s Hospital Medical Center called the Orchestra Project, with helping to keep him healthy.
“Now I have a picture of what health looks like for Drew,” said Moore, 35. “Tools like Orchestra that allow patients to take a more active stance in managing our health are still really undervalued.”
That may be changing, according to a study in the April issue of the journal Health Affairs that examines the movement to incorporate “patient-reported outcomes” into clinical care.
It may seem like a no-brainer to include patients’ assessments of their physical and mental conditions and quality of life into medical care, but such patient-generated data has traditionally been confined to research rather than clinical settings. Clinicians have typically focused more on physical exams, medical tests and biological measures to guide patient care.
However, as patient-centered medical care has taken hold in recent years, there’s been a growing interest in finding ways to use outcomes reported by individuals to help guide care.
“How are you feeling?” is a pretty standard conversation starter during a doctor’s visit.
“The challenge is that we don’t capture [the response] in a way that we can use [like] we do for blood pressure,” said Danielle Lavallee, a research assistant professor at the department of surgery at the University of Washington and the lead author of the study.
Policy and payment changes are helping to drive the shift. For example, a pilot program mandated by the Centers for Medicare & Medicaid Services that began last Friday requires roughly 800 hospitals in 67 metropolitan areas to bundle payments for knee and hip replacement surgeries and follow-up care. The program will reimburse providers for collecting patient-reported outcomes. Total joint replacement surgeries for knee and hip arthritis are the most common Medicare inpatient procedures.
At the University of Massachusetts Memorial Medical Center’s arthritis and joint replacement center, pain and joint function are measured for patients considering replacement surgery and tracked at each visit. If symptoms aren’t controlled with physical therapy and medical care, then patients and their doctors discuss whether surgery makes sense.
Dr. Patricia Franklin, a professor of orthopedics and physical rehabilitation at UMass who coauthored the Health Affairs study, and colleagues incorporated that template into a project funded by the federal Agency for Healthcare Research and Quality that implemented patient-reported outcomes for knee and hip replacements in more than 150 surgeons’ offices in 22 states.
“Patients were pleased because they saw that their assessment of their pain and function was part of the process,” said Franklin. Meanwhile, “surgeons were glad to have the data on the severity of pain before and after surgery.”
At Cincinnati Children’s Hospital, the Orchestra Project provides better collaboration between providers and patients with chronic illness such as cystic fibrosis or inflammatory bowel disease, said Lisa Opipari-Arrigan, an associate professor at the hospital.
A patient will see his care team — in Drew’s case, a pediatric pulmonologist, nurse, dietitian, social worker, psychologist, respiratory therapist and endocrinologist — a few times a year. But many health care-related events happen in between those visits, and they can be recorded in the tracking tool.
Together the provider and the patient decide what they want to track. And both can then monitor the details.
“It allows both the patient and clinician to see information in real time, both as a method of surveillance to find things out that are better to act on now, but also as a more specific and accurate record of what’s working and for decision-making,” Opipari-Arrigan said.
Erin Moore, a health care consultant who works with Cincinnati Children’s on patient-centered and collaborative care projects, said that having concrete data has helped her work with Drew’s medical team. For one thing, she doesn’t have to call every time she needs to recall when a medication was changed; it’s right there in the data.
Now they’re also using the same language. “In health care it’s such a struggle between the patient and the provider,” Moore said. “Now we both speak data. I feel more confident, and they feel like they have the information they need to make better decisions.”
Iowa is now two weeks into Medicaid managed care, with sharply differing views on the success of the plan’s roll-out. While significant issues are already emerging for both providers and beneficiaries across the state, Governor Branstad last week said the transition was “smooth,” despite more than 3,000 calls pouring in the Iowa Medicaid hotline on the first day of implementation.
“Smooth” is indeed in the eye of the beholder; if you’re one of the thousands of disabled Iowans who were left high and dry for transportation to your job, or someone whose prescriptions suddenly were unable to be filled, or those just learning that their physicians no longer accept Medicaid patients, you likely have a different adjective to describe the experience.
In the hospital community, IHA is already hearing concerns about upticks in emergency room use, requirements to change laboratory contracting arrangements, prior authorizations for swing-bed admissions taking as long as two weeks and patients showing up without membership cards or any idea about changes in Medicaid. And this is just the tip of the iceberg. Wait until hospitals run into billing questions, payment denials and the sheer administrative complexity of dealing with three separate Medicaid payers.
At a press conference last week week, the governor and managed care organization (MCO) representatives touted more beneficiary services and benefits than ever before. This includes access to nearly 17,000 physicians (compared to less than half that many physicians being licensed in Iowa and lots of news about physicians abandoning the program) and access to more than 2,000 occupational/physical therapists (compared to 900 such professionals participating in Medicaid just two weeks ago). The number of participating hospitals is conspicuously left off the list, perhaps because IHA called the question on an earlier report of 570 hospitals (again, there are only 118 hospitals in Iowa).
Additionally, the governor states Iowa’s existing Medicaid program had zero value-added benefits, while the MCOs promise more than 80 such services, including gym memberships, GED support, mobile health units, financial management programming, medication adherence programs, caregiver training, Boys and Girls Club memberships and post-natal coaching. It seems like everything except the keys to a brand new car!
As IHA has been pointing out for more than a year, the statistics and claims from those defending Medicaid managed care are beyond incredulous. Nowhere in the country have MCOs deployed these strategies in a widespread manner to improve care or to lower costs. Adding in the new costs of their “value added” programs can’t effectively cut 15 percent from Iowa’s $4.2 billion Medicaid program, especially in states (like Iowa) whose Medicaid programs have been efficiently managed. Much more common are strategies that deny patient access and cut provider reimbursement while siphoning taxpayer dollars to out-of-state insurance companies.
That’s the lesson to be learned from the experience of other states. It’s what Iowa can now expect. Check back in a month, six months or in a year to see if the transition is still “smooth.”
Twelve years ago, Kathy Good and her husband, Dave, were looking forward to the adventures of retirement together – Dave was a district court judge; Kathy was a therapist and licensed social worker.
“Dave started having vision problems,” Kathy recalls. “He was having trouble reading jury instructions. He got new glasses; he had cataract surgery, all to no avail. Eventually it was determined by a neural ophthalmologist that he had something called the visual variant of Alzheimer’s disease.”
Alzheimer’s disease – he was 56 years old.
Suddenly, both of their lives changed dramatically. Kathy began plans to care for David in their home – she became a family caregiver. Caregivers are often thrust into their new roles unexpectedly, with no understanding of services available or how to navigate the systems they’ll encounter.
Kathy was fortunate; she had a background in social work and knew where to start. Using her professional know-how, she assembled what she called the “committee” (services that helped Dave remain independent at home). She considered herself very lucky to have had the means to create a support system for Dave – she knew a vast majority of family caregivers had no help at all. She carried the thought of those caregivers with her as Dave’s needs changed and she adapted to meet those needs for over a decade before he passed in May 2015.
Today, she is well-known in the Cedar Rapids community as a resource for family caregivers. This prompted Tim Charles, Mercy Medical Center-Cedar Rapids President and CEO, to call upon her for insights into an idea for a new program – a community-focused family caregivers center that would offer a wide range of services to improve the overall well-being of family members caring for a chronically ill loved one.
“The stress of caring for someone with a chronic condition like Alzheimer’s, diabetes, heart problems –all chronic diseases – can cause caregivers to be depressed and anxious, to develop their own chronic conditions,” Kathy states. “They may have weakened immune systems. They may be at risk for their own mental decline. That’s just a few of the major things that could happen to a family caregiver when they start having to live life for, in essence, two people.”
She jumped at the opportunity to help other caregivers.
Since 2014 she has dedicated hundreds of hours to research, workshops and networking to bring the idea of a family caregivers center to life. She has met with caregivers to talk about their needs and human service agencies to talk about their existing support systems, determining gaps in services and formulating a plan to bridge those gaps through the center, ensuring services are not duplicated.
The Family Caregivers Center of Mercy is the product of her work – a unique, first-in-the-state initiative that will be funded through generous gifts to the Mercy Foundation’s Family Caregivers Center Endowment. October 2015 kicked off the foundation’s fundraising efforts with the goal of raising $2.5 million to fully endow the center. A full endowment means the center can offer services at little-to-no cost to the caregiver – a critical need.
The innovative center will be one of the few in the nation (and the only one in Iowa) using a community-based model, meaning that no matter where a loved one receives care – home, assisted living or hospital – the caregiver can find support. Some components of the Family Caregivers Center of Mercy include respite care; therapeutic outlets of journaling, massage and art; along with a 24/7 care line to answer any kind of question the caregiver might have. A resource library will be available and education sessions will be held on a variety of topics. The center celebrated its opening in December 2015.
– Pink Floyd
It’s been said that the worst thing about having a disability is that people see it before they see the person. That could be the primary message behind David Gilmour’s “On the Turning Away” and perhaps also an overarching problem with Iowa’s Medicaid privatization.
Don’t accept that what’s happening
Is just a case of others’ suffering
Or you’ll find that you’re joining in
The turning away
Even in a small state like Iowa, Medicaid is a tremendous undertaking that involves more than a half million people and $4.2 billion. For those focused on Medicaid policy, it’s easy to turn away, however unintentionally, and focus on the law, the numbers and the deals to be made. But for privatization proponents, the turning away has been more intentional, and the fact that there are real people within those numbers, people whose health and lives are impacted daily by deals in which they have no voice, is beside the point.
It’s a sin that somehow
Light is changing to shadow
And casting its shroud
Over all we have known
For thousands of Iowans, Medicaid is hope – hope for better health, for more opportunity, for a productive future. Medicaid allows them entry into the health care system and once through that door, a chance to gain control of something nearly all of us take for granted. For those with multiple, complex conditions (or, more likely, those who care for them), this is not simply finding a doctor but organizing and coordinating a team. It can take years to find the right people.
But those teams are being decimated and that light of hope, if not altogether shrouded, has been made gray, ambiguous and chaotic by those who claim to have the patients’ best interests in mind. For the managed care organizations (MCOs), that’s not a problem – they have been down this road dozens of times before. They bide their time knowing who must be convinced, who can be appeased and who can be ignored. And with the state’s chief executive willing to force things along unilaterally and to implement a turbocharged timeline, all the MCOs’ stars eventually aligned.
Unaware how the ranks have grown
Driven on by a heart of stone
We could find that we’re all alone
But why Iowa and why now? Certainly Iowa’s expansion of Medicaid made the state more appetizing to the MCOs. On the other hand, Iowa Medicaid’s history of administrative efficiency held them off – until the administration provided to the MCOs, in writing, the ability to triple those costs.
Still, the MCOs are willing to lose millions in Iowa – in the short-term. And the short-term is all the further the “must-do-something-now” state administration is reacting to. Once the MCOs play their full hand, including opening their own clinics and case management agencies, the nature of this supposed partnership with the state will be revealed in countless devilish details and privatization supporters will find themselves in a very lonely place.
Is it only a dream that there’ll be
No more turning away?
Gilmour’s song ends with a question mark and on April 1, there will still be many questions left unanswered about Iowa Medicaid privatization, including a huge one: how will the MCOs be made accountable? There are those who would let the MCOs write their own rules, answer their own questions and meet their own goals.
That’s a turning away that Iowa hospitals, and anyone who cares about Iowa and Iowans, simply cannot allow.