View Mobile Site


TOP RECENT CONTENT

Ga. parents of autistic children fight for new law

Bills stuck in committee would require insurance plans to cover treatment

POSTED: March 9, 2013 11:59 p.m.
Tom Reed/The Times

Matt and Anna Carpenter, with their children Olivia and Landon, support bills in the Georgia General Assembly that would require insurance companies to pay for assisted behavioral therapy for children with autism.

View Larger
View More »

Six-year-old Landon has no words, said Anna Carpenter, his mother. He can’t do anything without help, even seemingly simple things like brushing his teeth or feeding himself.

Landon is autistic and health insurance doesn’t cover therapy that would help him.

The Georgia Senate Insurance and Labor Committee is scheduled to hold a hearing Monday on “Ava’s Law” that would require insurance companies and other health insurance plans to cover treatments for autism, including applied behavioral analysis.

The bill is named for Ava Bullard, an 8-year-old girl from Lyons with autism, whose mother, Anna, has advocated for expanded autism coverage.

Georgia is one of 18 states that doesn’t require insurance plans to cover autism treatments. Carpenter, other mothers and supporters are planning to show up at the state Capitol to show their support for legislation. But with just 10 days remaining in the legislative session, its chances of passing are dim.

“He seemed like he didn’t even know that I was his mother,” Carpenter said of Landon. “I would try to play with him, make funny noises, try to get his attention. He would never look at me.”

At age 1, Landon could say about four words, but his speech disappeared as he entered a period of isolation so deep his mother said he didn’t seem to know people were around him. Landon has severe autism, along with several related illnesses, including disorder of the central nervous system, cognitive delay and sensory integration disorder. He will self-stimulate by jumping up and down and biting his hand. He smiled for the first time a year and a half after he sank into isolation.

“And the first time I finally got him to smile was just, of course, a tearful, joyous moment,” Carpenter said. “It was as if he’d never seen me before and he’d just noticed me.”

Landon was diagnosed when he was 2 years old. His doctor recommended several treatments, including speech, occupational and physical therapies and applied behavioral analysis. He has Medicaid and qualified for a Katie Beckett waiver, a program that allows the state to ignore family income for certain disabled children who qualify under federal Social Security requirements. The other therapies are covered, but not ABA.

The therapy works to encourage certain behavior by breaking down a behavior into steps and rewarding the desired behavior. It’s expensive and there’s a shortage of analysts in Georgia.

Carpenter takes Landon to the Marcus Autism Center in Atlanta. An analyst can charge between $100 and $150 per hour, which can add up to tens of thousands of dollars a year. The doctor who diagnosed Landon recommended 20 hours to 40 hours a week of the therapy, a price tag the Carpenters couldn’t afford.

“It’s undoable,” said Carpenter. She said her son’s health care insurer said it didn’t have to pay for it.

Jill Klink’s family faced a similar problem; a private insurer said her son’s autism was a mental illness, not a neurological illness. Judith Ursitti, director State Government Affairs of Autism Speaks, an advocacy organization, said autism is a treatable condition and children with intensive therapy and early intervention can “lose” their autism diagnosis.

Ursitti plans on testifying before the Senate insurance committee Monday. The Special Advisory Commission on Mandated Health Insurance Benefits, created by Sen. Tim Golden, R-Valdosta, in 2011, will discuss autism legislation Tuesday. Golden, chairman of the Insurance Committee, created the commission to study the social and financial impact of legislation that mandates insurance benefits or providers. However, Ursitti said the organization has worked to pass autism legislation since 2009 and the commission has never studied the issue.

“It’s important to note that there’s nothing that says they (lawmakers) have to wait for the mandate commission to act,” she said.

There are bills in both the Senate and House, but their language is the same. “Crossover Day” in the Georgia General Assembly on Thursday is the deadline when bills stuck in committees and not voted on out of one chamber are dead for that year. Both bills remain in each chamber’s insurance committees.

Landon and Klink’s son, Brinson, are in the same ABA class in the Hall County School District. Hall County has an ABA analyst who oversees a classroom and provides training.

Brinson, 6, spends half his time in the ABA classroom and half his time in regular kindergarten with a teacher’s aide. He now is potty-trained.

Landon can now squeeze toothpaste on his toothbrush and unlock his iPad, and he’s pointing to buttons that say he wants to eat or drink.

Both moms wonder where their kids could be today if they had gotten the recommended ABA training early on. It’s going to cost the state more in the future if this legislation doesn’t pass because these kids won’t have the skills to become productive members of society, Klink said.

“It becomes pay now or pay later,” she said.

Klink started a Gainesville support group a year ago for other parents with autistic children. The next meeting is from 6-7:30 p.m. March 25 at the Gainesville First Church of the Nazarene. The group is called ELLAFANT, which stands for Embracing the Lifestyle of Living with Autism Families Networking Together.

Mar. 9, 2013 11:25p.m. EST Ga. parents of autistic children fight for new law Gainesville Times

Six-year-old Landon has no words, said Anna Carpenter, his mother. He can’t do anything without help, even seemingly simple things like brushing his teeth or feeding himself.

Landon is autistic and health insurance doesn’t cover therapy that would help him.

The Georgia Senate Insurance and Labor Committee is scheduled to hold a hearing Monday on “Ava’s Law” that would require insurance companies and other health insurance plans to cover treatments for autism, including applied behavioral analysis.

The bill is named for Ava Bullard, an 8-year-old girl from Lyons with autism, whose mother, Anna, has advocated for expanded autism coverage.

Georgia is one of 18 states that doesn’t require insurance plans to cover autism treatments. Carpenter, other mothers and supporters are planning to show up at the state Capitol to show their support for legislation. But with just 10 days remaining in the legislative session, its chances of passing are dim.

“He seemed like he didn’t even know that I was his mother,” Carpenter said of Landon. “I would try to play with him, make funny noises, try to get his attention. He would never look at me.”

At age 1, Landon could say about four words, but his speech disappeared as he entered a period of isolation so deep his mother said he didn’t seem to know people were around him. Landon has severe autism, along with several related illnesses, including disorder of the central nervous system, cognitive delay and sensory integration disorder. He will self-stimulate by jumping up and down and biting his hand. He smiled for the first time a year and a half after he sank into isolation.

“And the first time I finally got him to smile was just, of course, a tearful, joyous moment,” Carpenter said. “It was as if he’d never seen me before and he’d just noticed me.”

Landon was diagnosed when he was 2 years old. His doctor recommended several treatments, including speech, occupational and physical therapies and applied behavioral analysis. He has Medicaid and qualified for a Katie Beckett waiver, a program that allows the state to ignore family income for certain disabled children who qualify under federal Social Security requirements. The other therapies are covered, but not ABA.

The therapy works to encourage certain behavior by breaking down a behavior into steps and rewarding the desired behavior. It’s expensive and there’s a shortage of analysts in Georgia.

Carpenter takes Landon to the Marcus Autism Center in Atlanta. An analyst can charge between $100 and $150 per hour, which can add up to tens of thousands of dollars a year. The doctor who diagnosed Landon recommended 20 hours to 40 hours a week of the therapy, a price tag the Carpenters couldn’t afford.

“It’s undoable,” said Carpenter. She said her son’s health care insurer said it didn’t have to pay for it.

Jill Klink’s family faced a similar problem; a private insurer said her son’s autism was a mental illness, not a neurological illness. Judith Ursitti, director State Government Affairs of Autism Speaks, an advocacy organization, said autism is a treatable condition and children with intensive therapy and early intervention can “lose” their autism diagnosis.

Ursitti plans on testifying before the Senate insurance committee Monday. The Special Advisory Commission on Mandated Health Insurance Benefits, created by Sen. Tim Golden, R-Valdosta, in 2011, will discuss autism legislation Tuesday. Golden, chairman of the Insurance Committee, created the commission to study the social and financial impact of legislation that mandates insurance benefits or providers. However, Ursitti said the organization has worked to pass autism legislation since 2009 and the commission has never studied the issue.

“It’s important to note that there’s nothing that says they (lawmakers) have to wait for the mandate commission to act,” she said.

There are bills in both the Senate and House, but their language is the same. “Crossover Day” in the Georgia General Assembly on Thursday is the deadline when bills stuck in committees and not voted on out of one chamber are dead for that year. Both bills remain in each chamber’s insurance committees.

Landon and Klink’s son, Brinson, are in the same ABA class in the Hall County School District. Hall County has an ABA analyst who oversees a classroom and provides training.

Brinson, 6, spends half his time in the ABA classroom and half his time in regular kindergarten with a teacher’s aide. He now is potty-trained.

Landon can now squeeze toothpaste on his toothbrush and unlock his iPad, and he’s pointing to buttons that say he wants to eat or drink.

Both moms wonder where their kids could be today if they had gotten the recommended ABA training early on. It’s going to cost the state more in the future if this legislation doesn’t pass because these kids won’t have the skills to become productive members of society, Klink said.

“It becomes pay now or pay later,” she said.

Klink started a Gainesville support group a year ago for other parents with autistic children. The next meeting is from 6-7:30 p.m. March 25 at the Gainesville First Church of the Nazarene. The group is called ELLAFANT, which stands for Embracing the Lifestyle of Living with Autism Families Networking Together.

Copyright 2011 MorrisMultimedia . All rights reserved. This material may not be published, broadcast, rewritten or redistributed


Comments

Commenting not available.
Commenting is not available.

LOCAL

SPORTS

LIFE & GET OUT

LOCAL VIDEO


Contents of this site are © Copyright 2010 The Times, Gainesville, GA. All rights reserved. Privacy policy and Terms of service

Powered by
Morris Technology
Please wait ...