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How Parent Mentors Work with Communities

Madison County Parent Mentor, PAM MOORE , fights for CHILDREN'S HEALTHCARE

Team Callie Wins Another Round

By Jane Grillo

Sometimes the actions of one parent can help a whole population of children. Pam Moore, Madison County Parent Mentor (and one of the original parent mentors,) has been a diligent advocate for Medicaid policy reform. For the past 7 years she has been working with attorneys from the Georgia Advocacy Office to enforce and strengthen the laws protecting a child’s right to services.


Pam Moore and her daughter Callie have been part of that small core of families who not only have a personal, vested interest in seeing that these Medicaid policies are followed, but they also see the larger need all around the state of Georgia. Callie’s disabilities require continuous treatment and due to her quadriplegic cerebral palsy and multitude of other conditions, (including a feeding tube,) she is considered medically fragile. Pam has worked hard to give Callie every opportunity to participate in inclusive settings both in her high school, church and around the small community they live in. Moore said, “Callie deserves to have a real life, just like any other teenager. Her medical problems prevent her from doing some things, but our motto is ‘There’s always a way!’.”

In April 2012, Moore received a favorable decision relating to the most recent hearing before the Honorable Judge Thomas Thrash, serving the U.S. District Court for the northern District of Georgia.

The core of the discussion has been about a provision in the federal Medicaid act called Early and Periodic Screening Diagnosis and Treatment (EPSDT).

Moore has worked to help parents, physicians and public officials alike to understand the importance and intent of EPSDT. “EPSDT is the most comprehensive child health program in either the public or private sector. This part of the federal Medicaid Act requires states to provide any ‘necessary health care, diagnostic services, treatment and other measures,’ to all Medicaid recipients under the age of 21. These services should be based on the child’s individual needs, as determined by their doctor. Further, services are not to be limited by pre-determined caps- such as cost- or by policies that restrict access,” she explained.

Moore explained how she began this legal journey, “Between 1999 and 2007, we received nine notices that Callie’s nursing hours provided by Medicaid were being reduced, in spite of Callie’s doctor’s recommendation to the contrary. State Administrative Law Judges settled arguments through several mediations and hearings, but Medicaid continue to attempt to restrict Callie’s nursing care.”

In 2007, Moore asked the Georgia Advocacy office to file a complaint in federal court on Callie’s behalf, asking for relief based on the EPSDT portion of federal law, not Georgia Medicaid policies.

Moore’s first lawsuit, filed in 2007 in federal court, cited the provisions of EPSDT because of a 10-hour reduction in skilled home nursing care based on the decision of a Medicaid Review Board physician, despite the letters of medical necessity and medical documentation of Callie’s Primary Care Physician, who stated that Callie’s skilled nursing care level was sufficient at the present level of hours.

From there, Moore explained, “A favorable decision was issued in 2009, which the state appealed. The 11th circuit court of appeals sent the matter back to Judge Thrash for clarification, and again he offered support of Callie’s position. The state appealed again, and the court of appeals reversed the decision. At the conclusion of their 90 plus page opinion, the justices offered the possibility of a trial to settle the dispute.”


So, Moore and GAO attorneys pressed on, and in April 2012, the trial commenced. Moore said, “GAO lawyers and I returned to the federal building in Atlanta, and most importantly, Callie finally had her “day in court,” with Judge Thrash again presiding.” After a month of waiting, “Team Callie“got the exciting news that the court ruled in her favor, finding that Georgia Medicaid had violated Callie’s federal rights by not following the guidelines of ESPDT. Further, Judge Thrash criticized the state’s policies that attempt to limit service under the pretense of medical necessity as "bureaucratic gobbledy-gook."

"The basic argument was over who has the right to make care determinations, the client’s personal physician or a medical review doctor, in this case, the Georgia Medical Care Foundation."

Since that initial decision to reduce services, Moore, the other five families and the GAO attorneys have been in court multiple times.


These cases are setting important precedents for families of children who need skilled nursing care services.

“Our children can’t speak for themselves; they depend on us. We have a responsibility to work together and make sure our most vulnerable citizens are protected, and there is no more basic need than health.”

Several other “companion cases” have been filed in the years since the first suit, and Moore said, “Much progress has been made in establishing care standards that are more in line with federal requirements.”


Currently, there is a request before Judge Thrash to allow one of those cases to be recertified as a class action suit. This would automatically protect the EPSDT rights interests of the estimated 500-600 Georgia children who are now receiving nursing services through Georgia Medicaid.


“Our hope is that every single child in Georgia gets the medical care he or she needs, and that by being as healthy as possible, every child lives life to its absolute fullest,” Moore said.

Please, do not reproduce this article in whole or in part without written permission of the Parent Mentor Partership of Georgia. Adress requests to Jane Grillo, Parent Mentor, White County, Georgia

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