CAP-MR/DD
CAP-MR/DD -- commonly referred to as "a CAP waiver", "a cap slot", or just "CAP" -- is a type of special funding provided by Medicaid but allocated on a first-come, first-served basis as funds become available. Funds are generally scarce, as the service provides a relatively high level of annual funding.
Josh has been on the waiting list for CAP since at least the fall of 2008; he was #17 in line at that time. The CAP funds were frozen shortly after that time, and no further slots were released for over a year. Normally new slots are released something like once or twice a year.
In November 2008, they created a lower-tier CAP slot (the "supports waiver") which does not pay for residential services; Josh needs the higher tier, a "comprehensive waiver", due to the need to pay for residential services. (Medicaid covers the actual service, but not his living expenses, and most providers will not take on a client without living expenses being covered. We were originally told that the will not accept private payment, but this turns out not to be universally true; e.g. RSI specifically mentioned private payment as an option when I told them that Josh did not have CAP or SSI.)
In December 2009, Governor Purdue's budget (partially paid for by Obama's stimulus program) finally released a number of slots, but only 3 were "comprehensive"; the other 28 were "supports". The Durham Center did not receive any of the "comprehensive" slots. They initially did not offer Josh any of the "supports" slots, but apparently enough of the potential recipients did not accept them that eventually there were some left over, and they offered him one.
We were unfortunately misinformed that the "supports" waiver would be no help unless he was living at home ("In order for your son to receive the CAP supports waiver slot, he will have to continue to live at home..."), so we turned it down. It later emerged (at the February 16 Care Review meeting) that this was incorrect, and we should have accepted the "supports" waiver.
See HTYP for more general information.