The Applied Behavior Analysis (ABA) therapy Gaps:  Autism laws apply only to traditional, fully-insured plans, in which companies contract with insurers to pay claims. These are becoming less common as large firms convert to self-funded plans, where employers pay for care more directly from their own funds. More than two-thirds of large firms in Pennsylvania and New Jersey are now self-insured, and beyond the reach of the laws.

 

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POSTED: August 11, 2014

http://articles.philly.com/2014-08-11/news/52652869_1_autism-bill-applied-behavior-analysis-autism-services

 

Tony Burke was an energetic 2-year-old who loved drawing purple pictures of Barney and jumping on trampolines. But then his parents began to notice how he would grunt instead of talk, and couldn't look anyone in the eye. Before his third birthday, in 2005, he was diagnosed with autism.

"It felt like my heart had been ripped out," said his mother, Suzanne Burke of Philadelphia.

Seeking the best care, his parents found applied behavior analysis (ABA), a one-on-one therapy considered the most effective treatment to date for autism.

While doing ABA, Tony's grunts became words like "cookie" and "juice," which later evolved into sentences, such as "Can I have some juice?" The intensive therapy was working.

But then the family's insurance started denying claims.

Even though laws in both Pennsylvania and New Jersey require insurers to pay for ABA, Tony's therapy wasn't covered in school, where he most needed help. And it was impossible for the Burkes to pay the nearly $80,000 a year this therapy costs.

Without ABA, Tony's language skills plummeted. His behavior spiraled out of control. "You feel helpless," said Tony's father, John Burke.

While autism laws were enacted before 2010 in both states, families like the Burkes are still finding large gaps. Coverage for ABA, considered the gold standard of care for autism, can be hard to obtain. Payments can be delayed. And the laws do not even apply to autistic adults.

These problems will continue to fester, even as the developmental disorder grows more common. Though it's not clear why, autism's prevalence is about 120 percent higher than estimates from 2000, with 2010 data showing that it now affects one in 68 U.S. children.

In New Jersey, the prevalence is even higher, at one in 45 children. Estimates in 2008 put Pennsylvania's prevalence at one in 75 children. A 2005 census identified 5,510 individuals with autism in Southeastern Pennsylvania.

Autism inhibits social interaction and communication. It produces repetitive behaviors, such as hand-flapping. It is five times more common in boys than in girls.

Since the law was passed in New Jersey, "we've seen an ebbing, but we still see a lot of problems," said Princeton-based attorney Jodi Bouer, whose practice helps autistic patients use insurance. Autism New Jersey, an advocacy group in Robbinsville, has collected complaints from 25 families about mandated coverage, said the group's Elena Graziosi.

In Pennsylvania, the prevalence of complaints is harder to gauge because the law also compels Medicaid, insurance for the poor, to cover autism services. Providers who don't get paid by private insurers will often just bill Medicaid. This masks the full extent of coverage issues, said David Gates, director of policy for the Pennsylvania Health Law Project.

Philadelphia City Councilman Dennis O'Brien, a former state representative who was the primary sponsor of the state's autism bill, also thinks the law has fallen short.

"We're disappointed," he said. "It's the law. The law is very plain."

O'Brien warns that "a tsunami" of older patients is coming, citing estimates that more than 31,000 autistic adults will live in the state by 2020. O'Brien has worked with welfare officials to set up two funding streams for autistic adults. But he admits the programs aren't nearly big enough to cover future demand.

With children, many problems involve ABA, even though the law mandates coverage for it.

ABA is an individualized approach to behavioral therapy that involves assessment and teaching based on ideas such as positive reinforcement. The therapy has been shown to produce large improvements in social behavior and communication, as well as basic life skills.

But some insurers avoid covering therapies a child can get at school, including ABA, said Bouer, dumping the costs onto public schools and other agencies.

When Tony Burke, now 10, entered kindergarten in September 2009, his parents submitted a claim to Independence Blue Cross to get coverage for Tony's ABA at St. Jerome School in Philadelphia. It was denied.

Making matters worse, Tony's ABA provider, the Lovaas Institute, also stopped providing ABA for Tony at home, as the bulk of billable hours would have been at school.

"Our policy excludes coverage for ABA therapy for autism in a school setting, which complies with PA law," wrote Ruth Stoolman, public relations manager for Independence. "IBC's plan designs contain a general exclusion for ALL services rendered in the school setting."

The Burkes didn't think this exclusion was right. Insurers "cover crutches, glasses, hearing aids, and wheelchairs. Can you not use those during the school day?" said John.

After several unsuccessful appeals through Independence, the Burkes found David Gates of the Health Law Project, who filed suit in Philadelphia Common Pleas Court in February 2010.

Over the next two school years, Tony had a behavioral aide in school through the Pennsylvania MENTOR program and Community Behavioral Health, Philadelphia's Medicaid provider for mental health. But the support he got was "not what he needed," said his father.

At the family's urging, Lovaas agreed to resume Tony's home-based ABA therapy in February 2011, with Independence reimbursing them, but ABA in school was still denied.

In July 2011, the court sided with the Burkes, agreeing that ABA should be covered in school.

Independence appealed the decision, and in August 2012, Superior Court sided with the insurer. This decision was based on a single sentence in the law that seemingly prohibits insured individuals, like the Burkes, from appealing final denials.

Tony, the subject of it all, remained unfazed. After one day of court proceedings, Tony provided comic relief as he clambered onto a table in the courthouse lobby and started talking to a portrait, thinking one of his favorite Monsters, Inc. characters was lurking behind it.

But John, a corporal in the Philadelphia Police records unit, and Suzanne, who works in human resources for the city, weren't laughing.

"We have a lot of hours logged into this insurance debacle," said John. On Sept. 13, 2012, he received 29 letters from Independence explaining that recent claims were being processed.

Mountains of paper are stored throughout the family's home: in 20-gallon tubs in the shed, a filing cabinet in the basement, and the storage ottoman in the living room.

In May, Gates argued before the Pennsylvania Supreme Court, asking them to overturn the lower court's decision. "We're cautiously optimistic," said John. "This is it. There's no other avenue at this point."

John and Suzanne are aware that the results of the case will likely not affect Tony. In fact, the Burkes' case applies only to a coverage period from January 2010, when the law went into effect, to July 2010, when their plan converted to a self-funded policy, yet another gap in the law. But that doesn't bother them. "It became not just about Tony," said Suzanne. "It's about all kids with autism."

Now that ABA is a large part of Tony's life, his behavior is much better, said John. Tony gets 121/2 hours of ABA therapy each week through Lovaas at home. This is in addition to the therapy he gets at the Comprehensive Learning Center in Southampton, where Tony enrolled in October 2012. The Burkes are represented by another attorney in ongoing efforts to get coverage for his schooling from the Philadelphia school district.

His play skills are better, said Daniela Andrade, a senior supervisor at Lovaas. Tony has also learned how to shift focus from himself to others.

But his parents wish he hadn't lost nearly a year and a half of therapy. "Where would Tony be at this point if he'd had the services he needed?" asked John.

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WASHINGTON, DC (July 8, 2014) -- In a major victory for Medicaid coverage of autism, The Department of Health & Human Services, Centers for Medicare & Medicaid Services (CMS) has directed the states to cover medically necessary treatments for autism for children and young adults, including behavioral health treatments such as Applied Behavior Analysis (ABA).

According to the Center for Disease Control (CDC), about one in 68 children is diagnosed with Autism Spectrum Disorder. An estimated one-third of all children with autism receive primary coverage through Medicaid.

In Pennsylvania, thousands of children with significant disabilities such as Autism Spectrum Disorder are eligible for the states Medical Assistance program. This program is a cost-sharing arrangement under which the federal government reimburses more than half of the expenditures incurred by states that elect to furnish MA to eligible individuals. States are not required to participate in the Medical Assistance program but, if they choose to do so, they must comply with the Social Security Act (Title XIX) and it’s implementing regulations. Pennsylvania has chosen to participate in the program.

 

The announcement by CMS makes clear that autism treatment must be addressed under Early and Periodic Screening, Diagnostic and Treatment (EPSDT) services which cover Medicaid-eligible children up to the age of 21.

"The time for walling off EPSDT from autism is over," said Melissa Harris, a CMS official who briefed the Interagency Autism Coordinating Committee on the changes.

 

"All children, including children with ASD, must receive EPSDT screenings designed to identify health and developmental issues, including ASD, as early as possible," the CMS guidance directs.  "EPSDT also requires medically necessary diagnostic and treatment services. When a screening examination indicates the need for further evaluation of a child’s health, the child should be appropriately referred for diagnosis and treatment without delay.

"Ultimately, the goal of EPSDT is to assure that children get the health care they need, when they need it – the right care to the right child at the right time in the right setting," according to CMS.

 

The Keys for Pennsylvania:

-          CMS recognizes that Medicaid can be used to fund autism treatment services, which specifically includes ABA.

-          Since BCBAs in Pennsylvania can be licensed under Act 62, their services can clearly be covered under Medicaid (without working for an agency with a mental health license!)

-          This guidance does make it clear that there are several provisions available in federal law under which a state can, and under EPSDT, must cover autism treatment services, including ABA under Medicaid.

Support Source: http://www.autismspeaks.org/advocacy/advocacy-news/major-medicaid-breakthrough-announced-autism

 

  

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Monday, June 9, 2014, three families filed a class action lawsuit seeking to represent all Pennsylvania children with Autism Spectrum Disorder who are enrolled in Pennsylvania’s Medical Assistance program and require Applied Behavioral Analysis (ABA) therapy.

The families allege that the Department of Public Welfare (DPW) fails to cover ABA services in an amount or scope that is consistent with medically accepted standards.


ABA is a nationally recognized treatment for autism with strong evidence of success. While DPW has not disputed this fact, they do not cover ABA as a distinct service. Instead they require children with autism to get their behavioral services through a program designed for children with emotional, rather than developmental, disorders.

As a result, DPW severely limits the scope of services to those aimed at the behavioral symptoms of autism and refuse to cover services that focus more directly on developing social, self-help and communication skills. While the generally accepted standard of care in the field of autism is to provide intensive ABA therapy to young children as soon as they are diagnosed with a significant Autism Spectrum Disorder, often by the age of two, DPW's policies do not allow intensive services until a child is at risk of out-of-home or out-of-school placement.

DPW's own Autism Bureau has written that this mental health service is not a good fit for children with Autism Spectrum Disorder.

The families want DPW to cover ABA as a distinct service using the standards and criteria that are generally accepted in the medical community for this service, so that their children, and all children with Autism, can get the services they need.

 

Source: https://www.drnpa.org/disability-rights-network-files-class-action-lawsuit-to-ensure-full-medical-assistance-coverage-of-applied-behavioral-analysis-for-children-with-autism-spectrum-disorder/

 

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Imagine your child was visually impaired and the right corrective lenses would allow him to see all the colors of a summertime rainbow. Now imagine your child is denied the proper corrective lenses so he forever remains in darkness.

Imagine your child was hearing impaired and a board certified otolaryngologists recommends a cochlear implant which would allow her to hear the birds sing and the sound of her mother’s voice for the very first time. Now imagine, your medical insurance won't cover the cost of the implant, and you don't have the means to pay for the surgery yourself, so your child remains in a world filled with silence.

Imagine your child could not speak, could not communicate and was unable to verbalize when he is hungry, scared or sad, and that he is trapped inside his own world, desperately trying to reach you, and if provided with an evidenced based, scientifically proven therapy, your child could communicate his basic needs and finally reach you in a way he has always wanted. Now imagine your child is denied that therapy by your state’s Medical Assistance Program even though a law has been enacted to provide the very same therapy your child needs to open up his world. A therapy that will enable your child to grow, thrive and progress in ways you once deemed impossible.

Many children in Pennsylvania who are visually impaired get eyeglasses so they can see. Many children in Pennsylvania who are hearing impaired get hearing aids or cochlear implants so they can hear. Most children who have an Autism Spectrum Disorder in Pennsylvania do not get Applied Behavior Analysis (ABA) Therapy so they can communicate, learn, and become more independent even though a law was enacted in Pennsylvania in 2008 to provide these children with the exact therapy they are continually denied.

Imagineparents, industry professionals, and lawmakers dedicated to change the future for all children in Pennsylvania with Autism Spectrum Disorder by ensuring access to Applied Behavior Analysis therapy via the State’s Medical Assistance program.

The ABA in PA Initiative aims to bring the autism community together as one united voice to urge Pennsylvania and private sector to listen to our concerns and take immediate action to address the service gap for ABA. It is our firm belief that, working together, we can assure that our children get the care they need, when they need it!

 

For a child with autism, advocacy is not a choice.

Please share our mission with others...

 

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