July 15, 2005

Dear Subcommittee Members,

We, the members of the Cross Disability Rights Coalition, are attending these subcommittee meetings under protest. CDRC understands the importance of Medicaid and long term care consumers’ contributions to these policy sessions – our motto is “Nothing about us without us.” Most of us will be directly affected by the CommunityChoice proposal, and we know that our contribution has been missed. But the state has failed to provide us with adequate supports we need to fully participate.

We have asked for four types of support, and have negotiated a more or less positive outcome on two these - transportation and personal care. These supports will help our membership of Medicaid/Medicare consumers give input at these meetings.

But our need for independent technical support is not yet resolved nor is our request for modest stipends which is, as Secretary McCann noted, “the sole rock upon which we stumble.”

For independent technical support, CDRC must work with people/groups who are:

·        familiar with disability issues,

·        allies with whom we are comfortable working,

·        able to address particular subcommittee issues individually, and

·        don’t have a vested interest in implementation of the CC proposal.

 The Secretary is reviewing this issue.

 CDRC has asked that our Medicaid/Medicare consumer participants on these committees be given a stipend of $50.00 per person per meeting. Stipends would only be paid to consumers and not to those who are professionals or who are otherwise being financially supported to attend these meetings. They would only be given to those who are the most needy.

 Our state must show that it truly values consumers’ dedication to prepare for and attend these intense meetings. Federal regulations permit the funding of Independent Technical Assistance and financial support, if needed, for consumer participation on Medicaid advisory committees. Meanwhile, we continue to serve on the CCAG without compensation. Clearly, the federal government values the time of consumer participation to the extent that they are willing to fund this and include it in federal law. The state of Maryland should so as well. Persons with disabilities have long worked for free on various advisory groups. But the recent Systems Change Grant Consumer Advisory Boards and Maryland Access Point Advisory Group have budgeted stipends for consumer participation as a proposal to CMS – acts for which they have earned distinction.

Please support our efforts to be full participants in these policy meetings. CDRC is hopeful that the Department of Health and the Department of Disability will find a way to help us help them and work with the leadership of CDRC to swiftly resolve these concerns.