What Is Your True Budget and When Will You Find Out?

Believe it or not, it took me from October of 2007 until December of 2009 to find out the answer to that question.
Let's say that a person is entering their final year of school and will be transitioning into adult services within the year. A phone call comes from someone contracted by the state to interview you about the needs of that individual. Based on that interview and documentation from school and doctors or specialists, 2 numbers are assigned to the individual between 0 and 5. A 5 and 5 indicate the highest level of need, lower numbers indicate lower levels of needed support. A dollar amount will be determined based on these numbers for your "budget" with which to plan for adult services under the New Directions Waiver.
You will receive a phone call, followed by a letter, informing you of this dollar amount. You will be told that if there is money remaining at the end of the year, it will not carry over into the next year, but will go into an emergency fund for other families, but will reset at the original amount at the beginning of the next fiscal year. This is true, but not true. This amount is NOT your true budget and it is not the amount that will reset at the beginning of each new fiscal year, as I believed it would.
Next, you begin the process of completing a plan of care and budget document. These documents show how the money will be spent within state guidelines and restrictions, and why these expenditures are necessary. You can request expenditures up to the dollar amount in your letter. If you request less that that amount, you will lose the difference, permanently. You must submit the Plan of Care and Budget document to DDA for approval. It make take considerable time to get your approval and you may be asked to submit many revisions to these documents before you receive approval. When, at last, you receive the approval by the state for the budget and plan of care for the first year in the waiver, the amount of THAT budget is your true budget. You may not go back and request any unused funds from your original budget letter at the beginning of the next fiscal year.
It is not clear to me why the second budget approval carries more weight than the original budget letter from the state. I thought that the original letter represented the true budget and didn't worry about requesting less than the full amount, believing that it would be available again the next year if V needed it. The second year I requested more of the original amount than the first year, but still less than the full amount, and received approval at 3 levels of DDA. Then, six months later was informed that the approval was in error and that I had to give the approved money back, as I was over budget. I have requested an explanation as to why the lowest of the 3 approved budgets is the only one that is "correct", but have not received any explanation. If I had been informed by anyone during the process of creating the first Plan of Care and Budget documents, that any unrequested funds would be lost forever, then I would have requested all of it. Too late now.
If you are going through the process of creating those first year documents, I hope that you read this and benefit from my experience in this matter.