I am representative of the hundreds of thousands of families across this country who are afraid to die because we don't know what will happen to our sons and daughters when we are no longer around to care for them. We are fearful that they will be forced to live in large congregate settings, forced to leave their families and friends or forced to live in substandard housing because there is nothing else available. The title of your forum clearly states that fear. In most states, the only way to get services for persons with mental retardation is at the time of severe crisis.
Crisis is spelt in capital letters.
Crisis means your caretaker is dead or dying. The service provided in that instance is disruptive. There are only three states that have attacked this problem and developed 5 year plans to eliminate the Waiting List in their states. Maryland was the second state under the leadership of Governor Parris Glendening. In the last few weeks Governor Pataki of New York announced his plan to eliminate the Waiting List in his state.