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'It is definitely a necessity': Fight for access to telehealth for autism services in rural Nebraska

Families in rural Nebraska fear the end of the COVID-19 health emergency will result in the loss of telehealth services for kids with autism.

'It is definitely a necessity': Fight for access to telehealth for autism services in rural Nebraska

Families in rural Nebraska fear the end of the COVID-19 health emergency will result in the loss of telehealth services for kids with autism.

AGENCY URGES THE STATE TO STEP IN SO CHILDREN WITH AUTISM DON’T LOSE ACCESS TO BEHAVIOR SERVICES. GOOD EVENING. I’M ROB MCCARTNEY. I’M JULIE CORNELL, NEBRASKA BEHAVIOR SUPPORT SAYS A RECENT ANNOUNCEMENT FROM THE FEDERAL CENTERS FOR MEDICARE AND MEDICAID SERVICES LIMITS TELEHEALTH OPTIONS FOR FAMILIES, ESPECIALLY THOSE WITHOUT CONVENIENT OPTIONS IN PERSON AND KETV. NEWSWATCH SEVEN’S JOEY SAFCHIK SITS DOWN WITH THE AGENCY AND SHARES THEIR CONCERNS. JOEY JOINS US LIVE. ROB JULIE, TELL HEALTH OPTIONS HAVE OPENED A NEW WORLD FOR KIDS WITH AUTISM AND THEIR PARENTS IN RURAL NEBRASKA, ESPECIALLY BECAUSE THERE ARE VERY FEW SUPERVISORS IN RURAL AREAS AND NOT A WHOLE LOT OF THEM IN THE STATE TO BEGIN WITH. THAT SUPERVISION IS MANDATED FOR SOME AUTISM SERVICES, BUT VIRTUAL SUPERVISION MAY NO LONGER BE AN OPTION AFTER THIS YEAR. OUT IN GENEVA, NEBRASKA, IN-HOME CARE OPTIONS FOR DAN LINDBERGH’S THREE KIDS WITH AUTISM ARE LIMITED. THE RURAL AREAS. THERE WAS NOTHING I HAD TO FIGHT. THAT FIGHT LASTED NINE MONTHS, DURING WHICH TELEHEALTH FILLED A VOID FOR THE RURAL AREAS. IT IS DEFINITELY A NECESSITY. WE JUST FOR WHERE WE’RE AT AND THE LACK OF PROFESSIONALS OUT THERE AVAILABLE. BUT NEBRASKA BEHAVIOR SUPPORTS REPORTS THE CENTERS FOR MEDICARE AND MEDICAID SERVICES WILL NO LONGER COVER APPLIED BEHAVIOR ANALYSIS SERVICES VIA TELEHEALTH. I’VE BEEN COMMUNICATING WITH FAMILIES WHO HAVE BEEN VERY MUCH IN CRISIS AND VERY MUCH IN DISTRESS AT THIS NEWS. WE FEEL VERY STRONGLY THAT IT’S A MISTAKE. COLLEEN HEISER OF NEBRASKA BEHAVIOR SUPPORTS SAYS SOME TWO THIRDS OF HER AGENCY’S CLIENTS DO NOT LIVE IN OMAHA OR LINCOLN. THERE ARE A LOT OF REALLY EXCELLENT AGENCIES HERE IN OMAHA AND LINCOLN, BUT IF YOU DON’T LIVE IN THESE LARGER CITIES, YOU’RE ACCESS TO SERVICES ARE SEVERELY LIMITED. HER AGENCY URGES ELECTED OFFICIALS TO CODIFY PERMANENT TELEHEALTH POLICIES AND IN THE MEANTIME, WE’LL BE PAYING OUT OF POCKET TO KEEP SERVICES UP AND RUNNING. THEY’RE ULTIMATELY LIMITING THE SERVICES TO OUR MOST MARGINALIZED AND MOST IN NEED. FAMILIES. BUT LONG TERM ACCESS IS IN LIMBO. IT’S MADE SUCH A POSITIVE IMPACT THAT WE’RE REALLY UPSET TO SEE THE POSSIBLE ANY OF THAT BEING TAKEN AWAY BEFORE TELEHEALTH BECAME AN OPTION. NEBRASKA BEHAVIORAL SUPPORT SAYS THERE WERE EXTREMELY LONG WAITLISTS FOR IN-PERSON SERVICES. THE GOVERNMENT ACKNOWLEDGES THE BENEFITS OF TELEHEALTH, BUT SAYS WITH THE ORAL AND ENVIRONMENTAL CHALLENGES FACED BY THIS POPULATION
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'It is definitely a necessity': Fight for access to telehealth for autism services in rural Nebraska

Families in rural Nebraska fear the end of the COVID-19 health emergency will result in the loss of telehealth services for kids with autism.

In Geneva, Nebraska, in-home care options for Danlynn Engberg's three kids with autism are limited."In the rural areas there was nothing, I had to fight," said Engberg. That fight lasted nine months, during which telehealth filled a void "For the rural areas, it is definitely a necessity for where we're at and the lack of professionals out there available unfortunately," said Engberg. Telehealth options have opened a new world for kids with autism and their parents in rural Nebraska, especially because there are very few supervisors in rural areas, and not a lot of them in the state to begin with. That supervision is mandated for some autism services, but virtual supervision may no longer be an option after this year.Nebraska Behavior Supports reports the Centers for Medicare and Medicaid Services will no longer cover Applied Behavior Analysis services via telehealth."I've been communicating with families who have been very much in crisis and very much in distress at this news," said Colleen Heiser, regional director of Nebraska Behavior Supports. "We feel very strongly that it's a mistake."Heiser said some two-thirds of her agency's clients do not live in Omaha or Lincoln."There are a lot of really excellent agencies here in Omaha and Lincoln. But if you don't live in these larger cities, your access to services is severely limited," said Heiser. Nebraska Behavior Supports urges elected officials to codify permanent telehealth policies and, in the meantime, will be paying out of pocket to keep services up and running. Before telehealth became an option, Nebraska Behavior Supports said there were extremely long waitlists for in-person services."They're ultimately limiting the services to our most marginalized and most in-need families," said Heiser. Long-term access is in limbo. The government acknowledges the benefits of telehealth but said more evidence of its success is needed, due to the oral and environmental challenges of this patient population. "It's made such a positive impact that we're really upset to see the possibility of that being taken away," said Engberg.

In Geneva, Nebraska, in-home care options for Danlynn Engberg's three kids with autism are limited.

"In the rural areas there was nothing, I had to fight," said Engberg.

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That fight lasted nine months, during which telehealth filled a void

"For the rural areas, it is definitely a necessity for where we're at and the lack of professionals out there available unfortunately," said Engberg.

Telehealth options have opened a new world for kids with autism and their parents in rural Nebraska, especially because there are very few supervisors in rural areas, and not a lot of them in the state to begin with. That supervision is mandated for some autism services, but virtual supervision may no longer be an option after this year.

Nebraska Behavior Supports reports the Centers for Medicare and Medicaid Services will no longer cover Applied Behavior Analysis services via telehealth.

"I've been communicating with families who have been very much in crisis and very much in distress at this news," said Colleen Heiser, regional director of Nebraska Behavior Supports. "We feel very strongly that it's a mistake."

Heiser said some two-thirds of her agency's clients do not live in Omaha or Lincoln.

"There are a lot of really excellent agencies here in Omaha and Lincoln. But if you don't live in these larger cities, your access to services is severely limited," said Heiser.

Nebraska Behavior Supports urges elected officials to codify permanent telehealth policies and, in the meantime, will be paying out of pocket to keep services up and running. Before telehealth became an option, Nebraska Behavior Supports said there were extremely long waitlists for in-person services.

"They're ultimately limiting the services to our most marginalized and most in-need families," said Heiser.

Long-term access is in limbo. The government acknowledges the benefits of telehealth but said more evidence of its success is needed, due to the oral and environmental challenges of this patient population.

"It's made such a positive impact that we're really upset to see the possibility of that being taken away," said Engberg.