Ask Mike - I'd like to help advocate for home care services in my state

Dear Want to Help,

Thanks for writing to me and thanks most of all for volunteering to advocate for PAS, aka "home care". You mention wanting help with getting started and you ask for information about centers for independent living (CILs) and you also ask for help with finding others who also want to advocate along with you. It may not be as hard as it seems.

Centers for independent living (CILs) are not-for-profit corporations that receive federal and/or state funding. CILs are consumer controlled. This means that a majority of the staff must be people with significant disabilities. Likewise, a majority of the Board of Directors must also be people with significant disabilities. This means that the centers should have a built-in understanding of many issues as peers with disabilities. It stands to reason that some of these individuals should use PAS, or at least have an understanding of the need for PAS. These CILs are also required to provide certain services and to engage in systems change advocacy. Systems change advocacy means activities aimed at changing laws, regulations or policies; many times at the local, state or federal governmental levels. Advocating for improved PAS could be an example of systems change advocacy. Ask to talk to the Executive Director or whoever is in charge of advocacy of the CIL and see if they would be willing to help you.

CILs are located throughout the country, in every state. Although many use the naming convention of "Independent Living Center of ...", that is not always the case.

To find out where CILs and the statewide network of CILs (SILCs) are located, go to our Help in My State web page. Next, click on a state and you will find a lits of "Agencies Related to PAS" for that state including contact information for State Independent Living Councils and Centers for Independent Living.

It is true that the CIL may not be able to release names to you for reasons of confidentiality. Consumer confidentiality is very important and should be protected. However, there are several things that the CIL can do to help you advocate and help you find others who may want to get involved:

• The CIL can send your name along with whatever information you want to share to individuals that the CIL knows. This protects confidentiality while allowing you to get in touch with others (or others to get in touch with you).
• The CIL could allow you send out invitations to its mailing list, or put them in its newsletter. These invitations would be to a meeting somewhere in the community or somewhere in the CIL, like a meeting room.
• The CIL could ask other community agencies to spread the word about your interest and then share any results with you.
• The CIL could start (or help you start) a support group or advocacy group for PAS users. You would be able to speak with and find like-minded folks at the CIL sponsored group.
• The CIL could allow you to write a column about PAS and the need for advocacy for its newsletter. This is a way to develop the issue in the community and develop interest in advocacy.

I hope this information helps you get started.

Best of luck to you.

Mike Oxford