Please listen to Wisconsin residents. Save IRIS.

To: Governor Scott Walker, Senator Alberta Darling, Representative John Nygren, and DHS Secretary Kitty Rhoades

From: Save IRIS

Subject: Please listen to Wisconsin residents. Save IRIS.

We started this grassroots movement with one very specific and obvious goal in mind…to Save IRIS. Given the importance of long-term care services and the complexities of Medicaid, we never felt that an overhaul of the long-term care system belonged in the budget. We asked from the start that changes to long-term care be taken out of the budget and that stakeholders, legislators, and DHS work together to develop a plan to meet the needs of participants in a cost-effective and sustainable manner.

The people spoke up to say that we want IRIS: Thousands of people signed a petition and completed surveys, testified at public hearings and town hall meetings, rallied, called, wrote, and visited the offices of their legislators. We asked and even begged you not to privatize our care with big insurance companies. We made sure that you knew how important IRIS is to the people of Wisconsin.

You proceeded anyway.

The experts advised against moving away from our current long-term care system: Not one disability or aging advocacy group spoke in favor of moving away from Family Care/ IRIS/Partnership. They presented data that showed our longterm care to already be cost-effective and that participants were satisfied. They presented ideas on how to make our current system even better. They shared cautionary tales from other states that proceeded too quickly and depended too greatly on HMOs, with devastating consequences for participants.

You proceeded anyway.

You said that these changes had to happen to control costs. Now data from DHS shows that the real cost-drivers are related to acute and primary care and that there will be no savings in long- term care (LTC) spending as a result of eliminating our current system and moving to Family Care/IRIS 2.0. We are left to ask you, “If the people don’t want this, the experts advise against it, and the data does not support it, then why would you proceed with Family Care/IRIS 2.0?”

We fear that if you don’t address the real problem, you will create new ones. These problems are not just on paper, they will be in our homes, at our jobs, and in our communities.

We believe that all of us want the same things: sustainable, cost-effective, quality programs that meet participants’ needs. No one wants to see our long-term care system fail and the ugly consequences that would bring for Wisconsin’s most vulnerable citizens.

We are people with disabilities, family members, and care providers, not professional lobbyists. We live long-term care, we don’t know how to market it. At this point, it is not as simple as a “yes” or “no” vote for JFC to make when the lives of so many individuals are wrapped up in this complex issue. We know that our “message” to you cannot take into account all the complexities of changing the lives of over 13,000 people in our state.

• We still don’t want out-of-state big insurance companies taking over.
• We believe that true self-direction, the IRIS you promised, cannot bloom in managed care. The budget process in the Family Care/IRIS 2.0 Concept Paper differs greatly from what IRIS participants experience now and that you promised would continue.
• Some of the ideas, such as using national core indicators and quality standards, described in the DHS Family Care/IRIS 2.0 Concept Paper and The Long-term Care Coalition’s Stakeholder’s Blueprint for Long-term Care Redesign would be great additions to our current system.
• We believe that the expansion of Partnership for people needing care management would better address true cost-drivers because it addresses folks with the dual eligibility of Medicare and Medicaid, which represents over 80% of long-term care participants.
• We believe that SSI managed care could be a helpful tool to address acute and primary costs for some IRIS participants and that IRIS could focus on educating its participants regarding preventative care and being good stewards of their health care.

So, as we sit at our kitchen tables waiting for JFC to hear all the information from people with disabilities, families, and providers that has been presented to them, a “yes” or “no” is an impossible task when there are so many gray areas that have not been dealt with up to now. But, what we know is that the lives of over 13,000 people using IRIS are too important to proceed quickly; this policy issue always required more time and attention.