When God Reversed an Impossible Situation!
Time was running short. Our son David would soon be twenty-one years old, usually a cause for rejoicing as a child becomes an adult and often moves out on their own. But for David, this wasn’t necessarily a good thing. David had been diagnosed with massive infantile spasms as an newborn, resulting in severe brain damage. And his condition had deteriorated to the point where he was now totally dependent upon others to meet all of his needs. He had a long list of medical diagnoses, and was tube fed and bed bound. Prior to his twenty-first birthday, David had received services through the Texas Medicaid children’s health program (CCP), and through it he received 112 hours per week of private duty nursing care in our home. But in Texas, Medicaid recipients lose their eligibility for CCP services when they turn twenty-one. His other Medicaid program, Home and Community Services (HCS), had a cost ceiling that would only allow him to receive four and a half hours of nursing services a day. The Department of Aging and Disability Services (DADS), the regulatory agency over David’s Medicaid programs, decided that the HCS program was no longer a safe placement for David. In essence, the only options they were giving us were to take care of David’s extensive needs (both medical and financial needs) on our own, or put him in a state school.
After talking with David’s neurologist and pulmonologist, and also visiting the state school closest to Houston, we knew this wasn’t an acceptable choice. David’s doctors said that he probably wouldn’t survive six months with the level of care he would receive at the state school, and even the nurses at the state school said they would not be able to meet his needs. Because of my own disabilities, there was no way I could meet David’s needs on my own, and my husband was at work during the daytime hours. So we began sharing our situation with our church and asking for prayer. We were facing an impossible situation, and we desperately needed God to intervene. The cry of my heart was, “God, please make a way for us to continue caring for David in our home.”
Frankly, my faith was at a weak place at the time. I felt overwhelmed, but to the best of my ability tried to hold onto hope that God would move on our behalf. I started sending out prayer updates to friends. And I contacted the Houston office of Advocacy, Inc., now called Disability Rights Texas, the federally mandated legal protection and advocacy agency for people with disabilities in Texas. Because of the precedent-setting nature of David’s case, the two head attorneys from the Austin office decided to take over the case. They advised us to appeal the decision made by DADS, and a “Fair Hearing” was scheduled. Our attorneys told us that they didn’t expect a positive result from this hearing, but it was a necessary first step before they could take our case to the Houston Division of the United State District Court. DADS did agree to continue David’s HCS placement and cover four to five hours of nursing per day as our attorneys prepared to take this to court. His twenty-first birthday was on July 10, 2005, and for about ten months we had some nursing care during the daytime hours, with me taking over when the nurses left and my husband relieving me when he got home from work.
The next step was to ask the federal court for a Temporary Restraining Order and Preliminary Injunction, which was approved and reinstated David’s private duty nursing services to the level they had been prior to his twenty-first birthday. This was filed on May 4, 2006, and approved almost immediately.
A final legal settlement was reached on July 14, 2006 that permanently reinstated the Medicaid-funded services David had received as a child. God had come through for us, turning the heart of the king – in this case, the federal judge – to fulfil His purposes (Proverbs 21:1). In the process, our faith had grown. And God was also able to use David’s case to help other families facing similar situations in our state.
In an article concerning our case in the Houston Chronicle, one of our attorneys was quoted as saying, “The fact they did make a decision in our favor does give some more hope of others having a victory, but it looks like it would need to be decided on a case-by-case basis at this time.” He went on to say, “If we can’t fix it administratively or legislatively, it would appear that a judge is going to have to decide the issue.” Since that time, our attorneys have been working to bring changes both in DADS rules and through the state legislature, but the last time I spoke with them they were still representing other parents facing the same situation we had on a case-by-case basis.
David is now thirty years old, and we know that this battle was worth the pain involved. We saw that God really could make a way where there didn’t seem to be a way, and our faith grew. Each year, his services have been approved, according to the court settlement. With his continued nursing care, David has been medically stable. Below is a recent photo of David.