Mother Tells of Discrimination Against Autistic Daughter
Kansas City, Missouri — The mother of a four year old repeatedly denied access to diagnosis and medical services for autism by her HMO joined with Missouri State Representative Tim Harlan and consumer advocate Jamie Court to ask U.S. Senators Ashcroft and Bond to support federal patients’ rights legislation. The senators will face a vote on the measure in September.
The legislation failed by one vote earlier this year and both senators from Missouri voted “no”. Either Bond or Ashcroft’s “aye” vote now could send the bill to President Clinton’s desk. (The Norwood-Dingell bi-partisan reform act already passed the House of Representatives.)
“With the HMO system, I was up against obstacle after obstacle, which prevented my daughter from seeing the doctors who are trained to diagnose and treat autism,” said April McCormick of Independence, Missouri “The bi-partisan patients’ bill of rights that Senators Ashcroft and Bond will vote on this month would help to prevent other families for having to fight for basic medical treatment and from living through what we did. Senator Ashcroft and Senator Bond can be the votes that makes the difference in passing this legislation and making it law. ”
The Norwood-Dingell reform would have allowed McCormick’s doctors to determine what was medically necessary, not her HMO’s bureaucrats, and allowed her to sue her HMO or threaten a lawsuit to compel care.
“Only 40% of Missourians can benefit from Missouri’s strong Patient Bill of Rights,” said Representative Tim Harlan. “We need the support of Senators Ashcroft and Bond to pass a strong bill on the federal level to protect the rest of our citizens.”
Because the McCormick family received their health care coverage through a private sector employer, Sprint, they were limited in their legal remedies and could not recover damages for benefits denied them.
Jamie Court, executive director of the Foundation for Taxpayer and Consumer Rights, pointed out that the federal Employee Retirement Income Security Act or ERISA, which precludes 125 million private sector employees from recovering damages, does not apply to government employees like Ashcroft and Bond.
“The votes of Missouri’s senators will determine whether 125 million American patients will continue to face cruel HMO denials and delays in the name of money, not medicine,” said Jamie Court, co-author of Making A Killing: HMOs and the Threat To Your Health (Common Courage Press, 1999). “Yet these two government employees have not been stripped of the legal remedies against an HMO that they have already voted once to deny to their constituents. If Senators Ashcroft and Bond are unwilling to change their ‘no’ votes to ‘aye,’ they should be willing to subject themselves to the same limited remedies as their constituents. Anything less would be hypocritical. All patients need the same big stick of a lawsuit to threaten their HMOs as some government workers have today.”
The Foundation For Taxpayer and Consumer Rights is a non-profit, non-partisan consumer watchdog group based in Santa Monica, CA. Making A Killing can be found on the Internet at http://www.makingakilling.org.
Statement of April McCormick
Resident of Independence, Missouri
I ran into trouble with the HMO system when my daughter, Sophia, at a very young age experienced problems with her balance, uncontrollable bouts of screaming, and difficulty walking, feeding herself, going to the bathroom and dressing herself. As early as one week old, she could not tolerate bathing, but would scream uncontrollably with great fear in her eyes. Her pediatrician noted in her medical charts at less than two years of age that she had development delays.
The problems became particularly acute when Sophia was four in 1999 and I turned to my HMO for help. I discovered that I could not go to the doctors equipped to help her. The HMO bureaucrats prevented me from even seeing the approved doctors listed in the HMO’s own provider handbook.
From July 1998 until February 2000, I was consistently refused access to the medical diagnosis and services my daughter needed. With the HMO system, I was up against obstacle after obstacle, which prevented my daughter from seeing the doctors who are trained to diagnose and treat autism.
o The pediatrician recommended we see a behavioral psychologist, who thankfully was listed in the provider handbook published by the HMO, which is a list of what doctors you can purportedly go to. However, when I tried to get authorization I was repeatedly told I could not see this doctor. This went on for several months, until we took her to a psychologist anyway. Only a complaint with the Department of Insurance resolved the matter so that the HMO would have to pay. However, the HMO claimed there was a mistake in the handbook and has since deleted that provider from their approved list of doctors.
o During this time, I was told I could only see only psychologists near my ZIP-code. I was provided with six names. Four doctors were not pediatric certified. Two phone numbers were not working numbers.
o The psychologist could not treat Sophia because it was a much more serious matter than he thought. He recommended she be evaluated by a pediatric psychiatrist. Against I was forced into the HMO’s lame referral process. I was denied a list of approved physicians and again asked for my ZIP code. This time I was only give one name . When I called that doctor, his receptionist told me that he was pediatric certified but that he did not like to deal with four year olds because they took too much patience. The receptionist then asked if I would like for the doctor to just write a prescription to calm my child down. I was appalled and decided I would just take her to the doctor of my choosing. (Ultimately, the human resources department at my husband’s employer, Sprint, intervened to make sure I had the approval. I had to go all the way up the chain of command to the person who actually buys the policies. I was lucky because I had personal knowledge of the appropriate person to contact , but others are not as fortunate to have an inside connection.)
o Once we had the autism diagnosis, which took ten months, then the HMO denied us the treatment for the diagnosis of autism. Sophia’s developmental pediatrician on the autism team at Children’s Mercy Hospital recommended sensory integration therapy — a very common and proven therapy for children with autism. We proceeded with the treatment because early intervention is of utmost importance, but the HMO refused to pay. Between May of 1999 until February of 2000, the HMO continued to refuse payment.
o The HMO claimed, contrary to all medical data, that autism is a mental illness that is not covered. Any MD with integrity will attest to the fact that autism is a neurological condition with which children are born, no different than a child who is born with whole in their spine, not a mental illness. We ultimately prevailed at a grievance hearing on this point in February 2000. Unfortunately, most people would not have the stamina to prevail. In addition to the emotional trauma of discovering that your children has a medical problem, the HMO put our family through countless hours of angst, frustration and emotional stress. It has taken a great toll on my emotional health and my family’s life.
No one should have to fight as hard as we did just to get conventional medical treatment. No one else should have to go through what my family did just to get treatment recommended by doctors. Not every one even could go through all the rigors we did to get to the point we are at. To me it is clearly a case of discrimination against a child who cannot defend herself.
The bi-partisan patients’ bill of rights that Senators Ashcroft and Bond will vote on this month would help to prevent other families for having to fight for basic medical treatment and from living through what we did.
It would make certain that a doctor’s definition of medical necessity prevails, not the HMO’s definition. It would also provide legal remedies for families like ours. 125 million Americans with employer-paid health care, like my family, cannot recover a dime in damages because of the current law. The patients’ bill of rights would allow us to sue our HMO and HMOs would change their outrageous behavior if they knew we had this recourse. Right now the HMOs’ modus operandi is to run you into the ground until you give up. Senator Ashcroft and Senator Bond can be the votes that makes the difference in passing this legislation and making it law. I urge them to change their vote from “no” to “aye” in order to protect innocent children in Missouri from the type of abuse and discrimination that my daughter suffered in the HMO system.