I am a student at Howard University. I have a group presentation on Cerebral Palsy in the aspect of Speech-Language Pathology. I was hoping that someone from this organization could send me some information on Cerebral Palsy.

You should have a listing of your board of directors on the website.

I hope you can help us with problems we are having with Medicaid.

My 4-year old grandson, Michael, has been covered by The Elderly or Disabled with Consumer Direction (EDCD) Medicaid Waiver in Virginia since the summer of 2006. My son and his wife applied for the waiver because no daycare would take Michael unless he had an aide with him. Michael is severely affected by spastic quadriplegic cerebral palsy and has about one partial seizure a month. He cannot talk, feed himself, eat solid foods, hold a bottle, reach for things, sit unsupported, has poor head control, and is not potty trained. It is extremely difficult for him to roll over by himself. In other words, he is totally dependant on others for his care.

Medicaid recently audited the agency providing Michael’s aide, and the auditor said that his aide cannot be with Michael anywhere except at home. The aide cannot go to Michael’s daycare, go with Michael to doctor or therapy appointments, and cannot take him to the swimming pool for his “swimming lesson,” a walk of 3 blocks. My son hired a lawyer who talked to the Medicaid auditor, who told him Michael’s eligibility for Medicaid should be reevaluated because Michael is not at eminent risk of being placed in a nursing home. The lawyer said to fight this in the courts would be a long and costly process. I do not understand why Michael would no longer be eligible. His situation has not changed.

My son and wife desperately need someone to be with Michael to assist him with everyday activities. They want Michael to be with other children, to learn how to live in the “real” world. Michael is a bright little boy who attends Special Education preschool 5 mornings a week and was in daycare (which is paid by my son) the rest of the time with his aide. Right now, Michael’s aide is watching him at home, but it is not an ideal situation for him. He is not getting the stimulation provided in the daycare setting, and the aide has no one to assist her if Michael has a seizure. I have a couple of questions:

1. What is the best way to proceed? Is there an appeal process that works quickly?

2. Is there any way of cutting through the red tape? Is there a way of going above the auditor? Where would one go?

3. Do you know of anyone who can help us?

I take Michael to therapy twice a week and it is difficult for me to handle him by myself. The drive is an hour each way, and the aide fed Michael while we were in the car. His mother has a disability that is making it harder for her to carry Michael. Both of us really do need assistance handling Michael. He had 40 doctor appointments last year.

When my son and his wife applied for the waiver, they asked if the aide could provide his care at a daycare facility. Someone “higher up” was consulted, and they were told that it was OK. Unfortunately, they have no written documentation of this.

Any advice would be greatly appreciated. Thanks, Helen

Great job with this page Young!