Ask Mike - Looking for more support

Dear Looking for more support,

Thanks for contacting me. You write that you live in Illinois and that you receive the maximum amount of hours (of PAS) allowed, but that you still need more. You are considering moving out of state in order to meet your needs, but would like to know the total amount of hours allowed in each state in order to make sure your needs can be met prior to moving to a new state.

I am not aware of any way to gather all of the exact information that you want. A factor that further complicates things is all of the budget and program cuts that are occurring right now. Many states are cutting or capping services (your issue), or they may be planning to do so. Even though the information you want doesn’t appear to be readily available, the PAS Center website still may be able to assist you with your search by providing you with state-by-state HCBS Waiver program participant expenditure data. This, at least, may steer you in the right direction. You can compare and contrast how much various states are spending per person and then contact states in which you are interested to ask their Medicaid program officials if they can meet your needs. Another resource on the website is contact information for Statewide Independent Living Councils and Centers for Independent Living. You can ask questions of these peer organizations, as well. From my look at the data, I can pass along that, in general, states in the southeastern part of the US tend to be the stingiest when it comes to PAS.

From our this website go to either either Medicaid Waiver Data, or Medicaid HCBS Data. The difference is that the HCBS data is aggregated while the Waiver data is presented program by program. Next, click on a state that interests you. You can see total expenditures or per person expenditures for that state and also compare those to the averages in the USA. In general, higher expenditures per person indicate more services and/or richer service packages. Once you find a state or two that interests you, go to either either Contact Info and Descriptions for Medicaid Waivers and/or Agencies Related to PAS. The first option will give you contact information for the specific program in that state while the second will get contact information for the state’s Medicaid agency. You should also note that under Agencies Related to PAS are found "State Independent Living Council and Centers for Independent Living". They might be a good source for peer to peer, on-the-ground, type information about that state’s programs.

While I realize that this isn't exactly what you wanted, it should, however, be a roundabout way to find out what you want and to provide a lot of helpful information.

Good luck!
Mike Oxford