Grant connects rural kids with needed services
Children with developmental and behavioral disabilities or disorders living in rural areas can often lack local access to needed specialists, but a grant called Telehealth ROCKS (Rural Outreach for Children of Kansas) is seeking to change that through the use of technology.
Shawna Wright, a project director for Telehealth ROCKS said the three-year grant written by Dr. Eve-Lynn Nelson, clinical psychologist/director of the Center for Telemedicine and Telehealth at the University of Kansas Medical Center, and co-investigators seek to improve the assessment and treatment of children with developmental and behavioral concerns using telemedicine to reach rural Kansas areas beginning in the southeast region.
The Health Resources and Services Administration grant covering Allen, Chautauqua, Cherokee, Crawford, Elk, Labette, Montgomery, Neosho and Wilson counties was awarded in September 2015.
“A large part of the reason we focused in on the southeast region of the state, with my best understanding of the grant is, when we looked at the state and where we could make an impact the southeast region of the state stood out for a couple of reasons,” Wright said. “One is the health professional shortage, that we just don’t have enough people on the ground that can meet the needs of families and children with developmental and behavioral disabilities or disorders.
“The other is the poverty rate. We know in this area of the state we have a high poverty rate. We see more uninsured and underinsured individuals, and so the grant is really targeted to helping those children and families that have don’t have access to services and covering costs and hoping to also reduce the cost of time and expense from travel for those that would otherwise have to travel to the city and finance the means to do that.”
While a good part of the grant reaches children within the autism spectrum, Wright said services are also available to children with other behavioral concerns, whether that be anxiety, depression, behavioral oppositional defiant and conduct disorder or other disorders.
“Our goal through telemedicine is to connect children with resources, treatment and assessment, but we don’t have an unlimited number of providers. So our goal is to connect children with resources. Some of them may have a bit of a delay. With some of our clinics, the delay can be three or four weeks. With others you may look at six to eight weeks. Our goal is to help get services to children sooner through telemedicine,” Wright said. “If a referral is made to a specialist, sometimes it can be six, nine, 12 months before they can be evaluated in the city. We’re hoping through telemedicine we can cut that time down. It is our hope with this program parents can acquire an assessment and diagnosis much sooner.”
Long delays in obtaining an assessment or treatment can create a variety of problems for parents and children. For example, within the school system, if children do not have a diagnosis they may not qualify for education plans designed specifically for their needs. For some of these children to have access, whether it is to educational or community resources, they do need to have a diagnosis, so the sooner one can be acquired the better for addressing a child’s needs.
Through the grant there are multiple providers available.
“We have providers that can assist with autism assessment as well as behavioral strategies for autism and other related concerns. Outside of that spectrum, we also have psychotherapy that is available for kiddos. In many communities, you have community mental health centers. and our role is not to compete with the existing service providers. We’re really hoping to reach out to communities where there is a shortage of those professionals.
“Then we have some specialized treatment protocols, like parent/child interaction therapy, and our team there that works with that specialty serves children with autism as well as children with other concerns. Some of our programs are really directed toward parent training. We have a protocol called Oasis, and it’s an intensive parent training program, and it’s a modular program. There’s eight different modules. It’s really structured for parents who have children on the autism spectrum to help them understand how to communicate with their children, how to help manage their behavior, how to help understand that disorder so they feel more confident and competent in addressing their children’s needs.
“We do have some psychiatric care and medication consultation, but like I mentioned before, we don’t have a treasure trove of providers at the KU Med Center so our goal is with our psychiatric care and our medication consultation to help stabilize the most severe children that are referred and once they are stabilized to turn them back to their primary care providers or pediatricians, local providers, and then consult with them to help maintain that child’s stability,” Wright said. “Then we have other providers who do behavior management, trauma-informed therapy, and then we have more health-based services — everything from pediatric obesity to feeding difficulties and then toileting concerns. We have a toileting clinic that’s been very popular. So through the grant there’s a multitude of services, so one child may be sent in one direction and another child sent in another. We have some very specialized areas where we are able to meet some of these needs.”
Believe it or not, Wright said, children take to telemedicine very, very quickly as it is kind of their world and their language, but there can be some hesitancy by some for telemedicine.
“It’s not going to work for everyone. But helping the patient understand how it works and that our providers have been providing telemedicine for quite some time helps,” she said. “This year actually marks the 25th anniversary for the Center for Telemedicine and Telehealth at KU Med, and so for our providers, it isn’t like they decided to turn on a computer and provide services. They are trained in telemedicine and they’ve done his work, so once patients come in and meet the providers, it kind of takes that ambiguity out of it and we find a way to make it work.”
How it works:
Typically what happens is a provider or someone within the school system flags a child and says this child and his or her family really need help with this and they might be open to telemedicine. They would contact the telemedicine coordinator, Joy Williams, at the office at the Center for Telemedicine and Telehealth at 913-588-2226.
Williams then sends out the intake paperwork.
“That is something parents may need a little assistance with. For our standard packet, we might have about 26 pages in that application, and we are unable to schedule appointments without getting all of that paperwork back. Sometimes we’ll ask a school nurse or a case manager to help them fill that out and get it back in,” Wright said. “Once the paperwork is in, then we have that referral question, whether it’s for toileting, or therapy, or parents … Then we coordinate with the parents to set up appointments.”
In Southeast Kansas one of the project’s largest partners and site partner is the Community Health Center of Southeast Kansas, Pittsburg. The center provides many of the project’s spaces, though there are others partners like the Life Span Institute in Parsons.
“So once we have a child that’s been referred and identified, we look at their geographic location and look at the nearest partner. Then the parent and the child present at that site once the appointment’s been made, and that’s where services begin,” Wright said. “Depending on which service they’ve been referred for, they may have four sessions or some may last up to 12, depending on what specialty they’ve been referred to and how chronic or severe their needs are. So at each of our telemedicine sites we have a facilitator who is trained to turn on the equipment and orient the child and the family to the equipment and then they introduce the provider. Then the services are provided through a secure network, so the provider is typically at the med center there in Kansas City. We connect with them live time, and most sessions last from 30 to 60 minutes — probably closer to 45 for most sessions. And that’s pretty much how it works.
“As part of the grant, we are required to bill insurance. Some of these services are covered by insurance and others aren’t. For the duration of the grant the cost of services are covered, so parents will not receive billing for any of the services that they receive through the grant. Their insurance may be billed, but if the insurance doesn’t pay, then the grant picks up the cost.”
Children can be referred for services with or without an existing diagnosis.
“Hopefully, if we can get them into our autism assessment team, they can help make that diagnosis, but then we have a variety of services available through telemedicine where a diagnosis is not needed. For instance, if we are aware of a child that is having feeding or eating difficulties, or possibly toileting difficulties, and they are suspecting they have autism or that they are on that spectrum, we can go ahead and make that referral to get the family the help that they need on a specific issue even while they are waiting on an assessment,” Wright said. “We’d much rather get in and help the parent out and help the child out with overcoming some of those needs, rather than having them waiting for a diagnosis.”
Last fall, Wright said they applied for an extension grant called Telehealth ROCKS Schools, and it was awarded, so they are getting ready to launch that grant. While not in charge of that grant, she said she believes that as well as the three-year grant they’ll be looking at extending those services, helping deliver telemedicine directly to the schools to meet the children where they are more likely to be and help reduce time away from school and travel to get services and treatment.
Another big endeavor on the grant is Project ECHO, developed to use the televideo to reach out to local providers and pediatricians in the area, connecting them with experts.
“Our first Project Echo was child psychopharmacology, so we had our child psychologists as a specialty team and they did eight training sessions with pediatricians here in Chanute and then the providers at the Community Health Center, and it was set up to give them direct instruction and help in how to prescribe medications in an evidence-based effective way to kiddos to build their skill sets,” Wright said. “Our hope through Project Echo is, we do the training and we also do some case consultations. What we are finding is then the local providers feel better versed to prescribe medications and to manage their patients at home. We really believe local care is really the best care, so if your local provider can take acre of you instead of sending you up to the city, that is what we’d like to see happen. So we work with the local providers to increase their competence and confidence in prescribing, and then we can use telemedicine to help those that might fall in the more severe end of the scale, or they may need to come up to the city if telemedicine isn’t for them. But our goal is to build the capacity of local providers, that they feel like they have enough knowledge and expertise to manage their patients that might fit in that more moderate range, that they might have thought before, ‘Hey, I have to send you to a psychiatrist,’ they may feel now, like, ‘I’ve got this. I can help manage this patient here and keep them local.’”
One of the next Project Echos through Telehealth ROCKS Schools will be on asthma, and professionals will work with providers as well as school nurses to provide them with direct training on asthma management and also to give them a chance to present some of their most difficult cases for consultation, “so everybody can learn from each other and again build up their skill sets.”
“So again, we can hopefully manage more kiddos locally rather than having to send them to a specialist,” Wright said.
In Pittsburg, the Community Health Clinic of Southeast Kansas provides telehealth spaces for children and families to visit with specialists.
In Neosho County, Wright said they are relying on other supports. Dr. Greta McFarland at the Ashley Clinic makes referrals to the project and she does participate in Project Echo, but Ashley Clinic, like many clinics, is very crowded, and does not have a designated telehealth space.
“So we have talked with the local hospital about providing some telehealth space for her referrals, but that is something we have not been able to fully develop at this point in time. There is some interest there, but they’ve got so many projects going on there. We’ve got some space over at Neosho County Community College that allows us to connect with kiddos directly in Chanute. We’ve been able to do some connection for a very limited number through the elementary school.
“What we do is, for instance in Allen County, in Iola, the Community Health Center has a building, but they are very crowded, and we have one telemedicine day where we can have an office, but there have been other community partners that have supported the grants and are backing what we’re doing to get services. The Southeast Kansas Mental Health Center has given up a day in their center to use a room for telemedicine so children and families can come in. We’re also in talks with the health department there in Allen County, and they’ve offered us a day so we can have some continuity of care. We do have sites, but we are also stretching it a bit, so if we don’t have a site close to someone in one of the counties that we serve, then we will pull on our network that is already established through KU Med. For instance in Sedan, the Sedan City Hospital has a telemedicine space, and we have kiddos not just come in from Sedan, but from some of the neighboring cities and small towns out there.”
In Parsons the Life Span Institute is the only telehealth partner.
It has only been since September that Telehealth ROCKS cemented the base and started taking on referrals. When Wright came onto the grant, the grant life was very new to her, so to get the grant up and running her approach was to start with facilities where they already had connections established, build up referrals there and then branch out.
“So the Pittsburg center, in having the Community Health Center, that’s been our target for rolling out in the first year of the grant. Next week will mark my year one. I live and work in Chanute, Kansas, and I’m familiar with this area and familiar with Allen County, so we’ve had more of a response and a buildup there, so my approach to the grant has been get rolling with the providers we know and that we have,” Wright said. “I don’t have as many networks and connections there in Parsons, but Parsons and Coffeyville are where I’m headed this spring to try to build up those connections and make sure that we have informed not just local providers but educators to help them be aware of the services that are available.”
Those in Labette County and surrounding areas interested in making application now or providers or pediatricians wanting to participate in Project Echo can call Joy Williams at the Center for Telemedicine and Telehealth at 913-588-2226. Those who are interested in learning more about the grant can call Wright at 913-588-2257.
All of the staff of Telehealth ROCKS is dedicated to seeing the program continue. Wright said a part of what they are doing to help support sustainability is prove cost savings.
“If you can screen and assess and identify these problems early, it can make a big difference. For a kiddo at 2, if parent or a pediatrician says, ‘I think we might be looking at an autism spectrum disorder,’ and they wait a whole year to be diagnosed, we’ve lost a lot of time with that kiddo. And so our objective is early intervention. It is where we need to head to have better outcomes because the earlier we identify and intervene, the better the outcome.
“Our hope with the telemedicine approach is early screening, early identification, early intervention. For the sustainability, the goal is to help demonstrate that, so that in terms of insurance coverage for telemedicine and for these specialty services, they will be covered,” she said.
Medicaid covers some telemedicine services in Kansas, though not all of the services Telehealth ROCKS provides.
“Our goal is to show the cost effectiveness of these interventions and the cost effectiveness of early interventions for these kiddos, and then working with Medicaid providers and other insurers in the state. If we can show cost savings, then the sustainability comes from having insurers that will cover these services. The one population that they still have a concern for is the uninsured,” Wright said. “Our hope for sustainability is to show the effectiveness and the cost savings of early intervention because what we know is that if we can help a child early, we’re saving on the special education services or other services that they may need in the school system. And their ongoing healthcare, if we can intervene early, we’re going to cut those costs. That’s what it seems to come down to with insurances is show us where we can save the money and that’s what we’ll cover.
“The other sustainability issue that we’re working on is establishing these telemedicine networks so as these agencies grow if we can help them understand the importance of having a telemedicine protocol and policy and get heir networks in place, if we can not just build it but teach them how to use it and help them see the efficacy of it, it will maintain those networks once the grant is completed.”