Meeting in the Tiger Morten Conference Room

A broad cross section of people with disabilities, parents and direct care staff asked to meet with people writing the Waiver renewal and offered four dates to do so before the Application was posted for public comment. The Dept. did not respond directly to our request and clearly was not interested in sitting with us to discuss these issues. The group chose to come to Charleston and take time out of our busy lives to try one last time to meet. The Department was aware that we were coming, in fact they tried hard to let us know that no room would be available and no one had the date or time on their schedule. When the eleven of us arrived at the Secretary of Health and Human Resources office, we were met by John Law, the Secretary's Communication Director, and Shana Phares, the Deputy Secretary of Health and Human Resources. They again stated that no one would be meeting with us and that public comment would begin on Monday when the application would be posted on the Web. One mom asked, “What about those of us who don't have computers?” The response was you can go to the public library. Unfortunately, for many families getting to the library is difficult and once there, in Charleston anyway, there is sometimes a one hour wait to get on and then only 30 minutes of time allowed on before the next person waiting gets a turn. Scott Miller said that the group was not looking to comment but to have dialogue with those writing the application so that ideas could be discussed before they were drafted into the application. John Law said that we would have to agree to disagree about whether comments were considered enough input or not. He then stated that the application has been written and will be posted on Monday. A camera crew from WSAZ and a reporter were present during this exchange. After this brief encounter with the Deputy Secretary and Communications Director of DHHR outside the Secretary's office, nine of the people gathered were escorted by the Communications Director and two security people to the Tiger Morton Conference Room.

Here is what the group agreed to as being important issues for consideration in drafting the Waiver renewal application.

1. The definition of Medical Necessity should be expanded to include the definition as written in the Medicaid Policy manual in Michigan.

2. Add Attendant Care Services to the list of allowable services. This is cost neutral and would not duplicate adult companion services since individuals are removed from the Waiver Program for just needing Attendant care services

3. Please assure that fixed time lines and data are available for the due process “process” and that attorney fee shifting provision is in place that allows consumers that prevail in fair hearings to recoup attorney fees.

4. Person centered planning and individualized budgets must be placed in existing budgets. See Michigan state plan. ( Michigan.gov)

5. There is no such thing as person centered managed care. It is an oxymoron.

6. There must be regular meetings between a cross section of stakeholders.

7. Information must be disseminated to ALL stakeholders through a variety of means (emails, snail mail, phone contact, public notice, etc.

8. Invest in the development of policy that resolves labor and tax issues, so that contracted services do not present an excuse for the agencies to refuse to provide needed services. Remove the optional label.

9. Eligibility determination should be based on CMS criteria based on New Freedom/Olmstead definitions.

10. If the program covers people with developmental disabilities then do not threaten people with developmental disabilities from being “kicked off” the program because they are functioning at a cognitive ability above mental retardation.

11. You expect individuals and families to be accountable, yet it is clear that there is no “corporate/state/bureaucratic accountability” (Out of compliance with Benjamin H, no data on status of fair hearings, no credible data available to APS for their assessment purposes to name a few).

12. Paperwork requirements could easily be consolidated to meet federal and state requirements. This would free up time for workers to do more direct service and reduce overall cost.

(23 pages of paperwork (one month) required for one individual is included in this packet. This mom has looked at the paperwork and could cut the paperwork in half and provide all the information required by the Waiver program.

13. Hold scheduled widely publicized public forums in a variety of formats and locations on a regular basis.