WAITING IN WISCONSIN A bulletin about the disability waiting list in Wisconsin written by Gerry Born October 2003 Vol. 2, No. 8 A VIEW FROM THE CHAIR This past July I had the privilege of being elected chairperson of the Wisconsin Council on Developmental Disabilities. This means that from that time my public policy work is now done strictly on a volunteer basis, since I would view it as either inappropriate or a conflict of interest to participate with any agency that has a Council contract. It also means that from time to time this bulletin will present items of significance to the DD Council and may go beyond the waiting list or People Can't Wait initiative to include other Council issues and state plan activities. I will also share some perspectives as the chairperson of the DD Council, but these will always be simply the views of the Chair unless the Council has specifically acted, and that would be so noted. I will also at times, as I am now, write some of the bulletin in the first person, particularly when it involves a personal perspective. Hopefully the readers will find these changes of interest and valuable. STATE LONG TERM CARE REFORM COUNCIL BEGINS On September 5, 2003 the new state Long Term Care Reform Council met for the first time. This Council was created by the Secretary of the Department of Health and Family Services (DHFS) Secretary, Helene Nelson, to advise her and the department on matters relating to moving Wisconsin forward in reforming its long term care system. Most DHFS services used by people with a developmental disability or their families are considered long term care. There are number of people on the Council who represent the disability perspective including Lynn Breedlove, who was chosen as vice-chair, and Nancy Livingston, who was chosen for the executive committee, both at the second meeting held on October 14. This writer is a Council member, representing the DD Council. It is clear from the first two meetings that DHFS wants to move ahead with long term care reform and use what it has learned from current experiences in its reform. Some of the "givens" of the reform include the expansion of resource centers to all counties, the use of managed care principles and having a Family Care type of program throughout the state, expanding the partnership programs, and eliminating the institutional bias. DHFS lists Access, Choice, Quality, and Economy as the basis for this reform. The next major initiatives in this reform activity are seeking a demonstration waiver from the federal government to make some immediate and longer range changes in the state's approach to long term care and have more communities in Wisconsin involved in long term care reform through an initiative called "pre-Family Care", which is still being defined but which begins to have more long term care agencies use Family Care and managed care principles. The Council is scheduled to meet the second Friday of each month. It will be difficult to get complete agreement from all 27 members regarding some of the most controversial aspects of the reform. One example of this will likely be the role of counties in the reform. It appears that DHFS prefers a more regionally based approach to long term care management, which will require a thoughtful way to keep the individual counties involved. A public/ private partnership will also need to be developed further. This Bulletin will keep the readers updated and informed. COP CAP PROPOSED FOR MATCH FOR DD WAIVER Led by the Bureau on Aging and Long Term Care, DHFS has informed counties that they will no longer be able to use more than 25% of their Community Options Program (COP) allocation or the 2002 or 2003 amount used for CIP match, whichever is greater, to match the DD Waiver, CIP 1A and 1B in 2004. As is well known, in Wisconsin many, if not most, of the waiver slots are matched with local funds that come from county taxes, Community Aids, or COP. In fact, no new state funded CIP 1B funds are available during this two-year budget period. All new slots must be matched with some type of local funds. This limitation on the use of COP for match will likely cause fewer DD placements in some counties. The DD Council has asked DHFS to have advocates involved in any further discussions with counties on this policy change and its implications for county DD waiver services. SOME INTERESTING PIECES OF INFORMATION * Some of the largest lobbying efforts during the budget period by spending include: Wis. Education Association Council--$733,635; Wis. Manufacturers and Commerce-$302,535; Forest Co. Potawatomi Community-$267,926; Wis. Counties Association-$260,677; and Wis. Independent Business, Inc.-$251,600. All of this was spent to gain support for their positions primarily on the state budget. * People Can't Wait can't compete with these lobbying efforts in dollars, but PCW can match their efforts with volunteer time and effort. * Regardless of one's perspective on Iraq, $87 billion on top of the $79 billion already spent could certainly help to serve many people needing assistance in this country. In the September 15, 2003 issue of the Wis. Council on Children and Family's Health Care Issues Bulletin, some items that $87 Billion could fund were listed: it would be enough to pay for all state tax supported programs in Wisconsin for the rest of the decade; it is 119 times the federal amount spent for the Maternal and Child Health Block grant; and 3.3 times the annual amount spent for the Food Stamp program. If some of that would have come to Wisconsin for long term care reform, just think how many additional people could be served. * On October 30, 2003 as part of the Arc's pre-conference, there will be an advocacy training event-Expanding Disability Leadership Across Wisconsin, focused on special education advocacy. It runs from 9:30 a.m. to 3:30 p.m. at Prairie du Chien High School. For more information, please contact the Arc Wisconsin office at 608/251-9272. More in about a month. This bulletin was funded, in part, by the Wisconsin Council on Developmental Disabilities using federal funds provided under P.L. 106-402 through a grant authorized by the Administration on Developmental Disabilities and the U.S. Department of Health and Human Services. The information reported herein was compiled pursuant to the State Plan on Developmental Disabilities. Grantees undertaking projects under Council sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent the official position or policy of the Wisconsin Council on Developmental Disabilities. The Arc Wisconsin provided additional funds to produce this bulletin. PEOPLE CAN'T WAIT ... SURVIVAL COALITION OF WISCONSIN DISABILITY ORGANIZATIONS 16 North Carroll Street, Suite 400 Madison, WI 53703 608-267-0214 voice/tty 608-267-0368 fax