Special needs. Special education. Special diet. Special doctors, hospitals, equipment, medications, therapies. Sometimes being "special" isn't all it's cracked up to be, especially when it comes to the life of a child.

Like most parents, I work very hard to help my daughter, Callie, have a real life, in a real community, with real friends. I want her to be a healthy, happy, responsible person who makes a contribution to her world. Like other parents, I've discovered this isn't easy, especially since Callie has a multitude of health problems stemming from strokes she had before her birth.

The biggest and most frustrating challenge, however, hasn't been health problems. Instead, it is the fact that Georgia Medicaid has repeatedly refused to provide the care our physician has ordered so that Callie can have as much of a "regular" life as possible.

Although Callie's doctor knows everything there is to know about her medical needs, his treatment decisions have been ignored and overruled time after time. A Medicaid official once even went so far as to threaten institutionalization of my child if her doctor didn't change his recommendations for her nursing care.

The message was clear: Georgia Medicaid intends to cut costs, even if it means children don't get the care their doctors prescribe.

This is in direct violation of Congress' intent when it passed the Medicaid Act and the 1989 addition of the Early and Periodic Screening, Diagnostic, and Treatment provision. EPSDT requires states to provide all medically necessary services to Medicaid-eligible children under the age of 21, even if those services are not a part of the state's Medicaid plan or included in the menu of services offered to adults. The federal government even bears a larger share of the cost, paying 60 percent of EPSDT services while the state only pays 40 percent.

There was recently a turning point in our nine-year-long struggle to let Callie's doctor decide what her treatment should be. U.S. District Court Judge Thomas Thrash agreed with our position that EPSDT guarantees Callie the medically necessary care her doctor orders. Callie will get the care she needs to stay alive and as healthy as possible.

Our personal struggle mirrors those of thousands of other Georgia families. For years, the Georgia Department of Community Health (which administers Medicaid programs) has created policies and procedures that limit the health care services our children need and are entitled to have. Medications have been excluded from "approved" drug lists. Therapies have been limited to a predetermined schedule, regardless of the needs of the individual child. Equipment, supplies, nursing services, special formulas, hearing aids, etc. have been denied to children.

In medical terms, these ill-considered decisions have led to prolonged illness, delayed recovery, deterioration of health, increased hospitalization, even death. In terms of finances, money has been wasted when preventative care was denied and more serious conditions developed. More importantly, in human terms, children have endured unnecessary pain and suffering and have had their quality of life taken away.

Families like ours don't want unfair advantages or handouts from our state; we just want what our children deserve to help us help them live the best lives possible. This court decision moves our families closer to achieving this goal. There's nothing "special" about that.