Managed care system fails family

Jessica Pope

October 16, 2006 12:06 am

— VALDOSTA — When the Georgia Department of Community Health unveiled the state’s new managed care delivery system, Will and Kelly Collie thought they had nothing to worry about. It was not supposed to negatively affect the services their special needs children received, only provide a few enhancements.
With a daughter covered by Medicaid and a son on PeachCare for Kids, Will and Kelly understood that Georgia Healthy Families would simply change the way their children received health care services by having them enroll in one of two care management organizations and choose a primary care provider. The young couple decided to go with Peach State Health Plan Inc., believing it to be the one best suited to meet the needs of their autistic children. Their other option was WellCare Health Plans Inc.
“Each plan gives families extra services in addition to the basic health services they already receive,” stated a Sept. 15 release from Georgia Healthy Families and the Georgia Department of Community Health. The three-page document filled with facts about the system also noted recipients would experience no change in benefits: “You will get the same Medicaid or PeachCare for Kids benefits and services that you get now. The only difference is that now you will get these health care services through a health plan.”
Although it all sounded good over the telephone and looked good on paper, Will and Kelly eventually discovered that they had not been told the whole truth about the state’s new managed care delivery system. Physician-prescribed therapy services would not continue as before, and their children’s future health and well-being would be risked so the state could potentially save a few dollars.

Adrianna’s Story
Adrianna Collie was 3 years old when she was diagnosed with Asperger’s syndrome, an autism spectrum disorder. Her parents found it difficult to accept the determination that their firstborn had one of a distinct group of neurological conditions, one characterized by a greater or lesser degree of impairment in language and communication skills, as well as repetitive or restrictive patterns of thought and behavior.
“It was very overwhelming to find out she had autism,” Will said. “Even though Asperger’s syndrome is considered to be a ‘higher functioning’ form of autism, it was still very devastating at the time. My wife and I knew very little about autism and, like most people, were under the impression that autism was brought on by genetics only. With no family history of autism, we were very confused. As new parents, we had so many expectations of her first words, but it seemed like they would never come.”
Will and Kelly later learned Adrianna, who’s well beyond 4 years of age now, also suffered sensory integration dysfunction, a characteristic of autism spectrum disorders. With this neurological disorder, she experienced difficulties processing information from the five classic senses, the sense of movement, and/or the positional sense.
“... (this) threw us completely,” Will continued. “We went through a tough grieving process. We felt helpless, responsible and did not know where to turn for answers.”
With the help of Medicaid, Will and Kelly were able to secure the necessary early intervention speech and occupational therapies for their daughter at a time in her development when she needed them the most. Adrianna flourished during the physician-prescribed weekly 1.5-hour speech therapy and one-hour occupational therapy sessions. Her parents no longer felt helpless and alone; hope was restored.
“Adrianna has hyperlexic characteristics, which brings out her echolalia (she often repeats what is said to her),” Kelly said. “She has very strict repetitive behaviors, delayed self-help skills, (and) often she needs to be verbally cued on simple tasks to perform them accurately. She has difficulty using language in a social context, which makes social interactions awkward at times. She ‘had’ severe sensory integration issues, but a majority of her problems have disappeared through intense early intervention therapy,” Kelly said.
However, Adrianna’s progression was short-lived once the Georgia Department of Community Health implemented the state’s new managed care delivery system. Georgia Healthy Families — which was supposed to give “families extra services” and allow them to continue getting “the same Medicaid or PeachCare for Kids benefits and services that you get now” — cut her therapeutic services to only one hour a week of speech and one hour of occupational twice a month.
Will and Kelly learned it was a panel of Peach State Health Plan Inc. experts who made the decision not to continue Adrianna’s therapy as prescribed by her physician. As a result, their young daughter, who had finally worked her way up to attending preschool special education classes, began to regress.
“One-half hour of speech therapy a week might not seem like a lot to lose, but it was cut at a time when Adrianna’s still developing her language and communication skills,” Kelly said. “Cutting the occupational therapy by half really hurt since she has sensory integration issues. That’s the only thing that will help her overcome it. We would give up all the supposed extras if we could have that time back.”
Adrianna’s preschool teachers noted how she lost her ability to pay attention to things rather quickly following the change and how she began to get easily frustrated with simple tasks. Her parents recognized a heightened sense of hostility in their daughter, who often appeared to be on the verge of a meltdown due to her inability to understand the world around her and communicate her wants and needs.

Justin’s Story
Justin Collie had just turned 2 years old when Will and Kelly noticed he exhibited a collection of features that resembled autism, although maybe not as severe or extensive. He was later diagnosed with PDD-NOS or pervasive developmental disorder — not otherwise specified, an autism spectrum disorder.
“With our son, it was not a complete surprise,” Will said. “We knew the basic signs because of our daughter, Adrianna. But at the same time, it was still hard to take in, and again we felt a certain responsibility, like it was our fault in many ways. My wife and I had another grieving process and then just said, ‘Here we go again. We can’t give up.’”
With the help of PeachCare for Kids, Will and Kelly were able to secure the necessary early intervention speech and occupational therapies for their son, at a crucial time period in his development. Like his sister, Will flourished during the weekly one-hour speech therapy and one-hour occupational therapy sessions, which were physician-prescribed. His parents witnessed an unbelievable transformation in their son, who’s now well on his way to 3 years of age, within a matter of months.
“Before therapy, Will was a completely different child,” Kelly said. “He used to scream all day long. We could not take him anywhere without people staring, which left all of us feeling isolated from the world. Family and friends would look at us as if his behavior was our fault ... a result of bad parenting.”
Therapy helped Will overcome his significant speech and developmental delays, which were making it next to impossible for him to express his basic wants and needs. It also helped him deal with his social anxiety, severe behavior problems, hyperactivity and sleep disorders.
However, like his sister, Will’s progression was short-lived once the Georgia Department of Community Health implemented the state’s new managed care delivery system. His therapeutic services were cut by more than half, again by a panel of Peach State Health Plan Inc. experts.
Justin lost his ability to pay attention to things rather quickly following the change and began to get easily frustrated with simple tasks. Will and Kelly also recognized a heightened sense of hostility in their son, who, because of his poor communication skills, started using his physical strength instead of his words to express his wants and needs.
“... I was told no services would change,” Will wrote in a recent letter to the editor of The Valdosta Daily Times. “Why was I lied to? Is Georgia so strapped for cash that they cannot help the weakest of citizens? Will I have to institutionalize my child or children as they grow older because they can no longer function in society? How much will this cost the taxpayers or is the solution for every family with disabled children to move to a state that actually wants them to develop into functional members of the community? I need answers please. Are Georgians so callous that they have lost interest in those that need the most help? When I was growing up, we prided ourselves on the courteous and caring manner in which Georgians behaved. Where is that now? My story is just one of thousands from concerned parents and providers. Please help us to believe in Georgia again.”

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