Ask Mike - What is the maximum allowed income to receive Medicaid auxiliary grants for assisted living?

Dear Mike,

I understand that Centers for Independent Living (CILs) are extremely limited in "lobbying" either federal or state legislators, is this true? How can I learn how to "advocate" at my state capitol for issues of importance to me as a person with a disability? It seems like there are a lot of people visiting our state capitol. I know how to look up a bill on the Internet if I have a bill number; I sometimes use "key words search" but then I miss some very important bills. Are there tips on how to find all pertinent disability-related bills?

Thank you,

Cautiously spreading my wings

Dear Cautiously Spreading My Wings,

By and large, CILs (and most other not-for-profits) are allowed to lobby as long as certain rules and restrictions are followed, one of which is that federal funds (such as those going to CILs) cannot be used for lobbying. Many states also do not allow state (CIL) funding to be used for lobbying. There are other IRS restrictions as well on lobbying (see more at http://www.irs.gov).

The most useful thing someone with a disability can do to advocate effectively at the state level is to "tell your story". On any given issue, speak of how you or your family/loved ones are impacted by the bill under consideration. Various agencies often provide training and information on the legislative process in their state. Examples of agencies that do this include the Governors Committee on Disability Concerns (sometimes called the Governor's Committee on Employment of People with Disabilities), the Statewide Independent Living Council (SILC), Silverhaired Legislature and Centers for Independent Living (CILs). These agencies can found on the PAS Center website, on our Help in my State page. Finally, do your homework. Read and research about the issue in which you are interested. An "expert" is often someone who has read up on the most readily available research materials. The PAS Center website contains a lot of very recent research and publications on the topic of personal assistance services.

State legislatures print a daily or weekly calendar. This calendar includes all bills to be introduced and referred to committees on a given day as well as bill status; what bills have passed, which committees they are in and so on. Generally, the bills are listed by bill number, committee assignment and short title. The short title includes key words that can be used to search for a given topic such as, "An act concerning the act against discrimination, relating to disability". This can help to save time and can help to avoid having to read the entire text of the bill. On the other hand, scanning the entire bill text can help to ensure that all germane bills are tracked. Sometimes disability issues are covered in bills without a direct reference in the short title. In the end, the only way to completely ensure that all disability issues are found and tracked is to read through the calendar and at least scan all bills as they are introduced. It may help to split up this reading and scanning work with fellow advocates and then engage in frequent communication.

Good luck.

Mike Oxford

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