Nothing focuses your attention like a crisis that stares you in the face or looms on the horizon. We certainly know this from dealing with Minnesota’s state budget crises in recent years. The disability community has worked valiantly to preserve disability supports. But add changes in demographics and future health care spending on top of our current problems and everyone is forced to really think about doing business differently.

Our current system providing services is not sustainable, effective or efficient. This is true of both disability supports and supports for older Minnesotans. That’s why a number of us came from across the state to St. Paul on March 5-6, for the “Creating a 21st Century Plan for Disability & Aging” summit.

By the end of the summit, no final plan was created and approved. However, elements of agreement are already out there and can be part of a common plan. People in both the disability and aging community who attended were glad for the chance to gather together – some of them for the first time.

One of our challenges is a communications problem. Disability spending is often addressed as an afterthought in larger discussions of health care reform. Most the energy, words, and ink are spent on discussing acute care needs. We must make sure long-term care is on the table at any forum where health care reform is debated.

Many other challenges are ahead. LaRhae Knatterud from Minnesota’s Department of Human Services described the “Age Wave”—the demographics of an aging Minnesota. The number of those 65 and older and those 85 and older will more than double over the next 30 years, increasing the demand for future services and worries about the health care older Minnesotans will face in the future.

Barbara Coulter Edwards from Columbus, Ohio-based Health Management Associates talked about a different set of numbers, linked to health care dollars being spent on Medicaid and long-term supports. She also described the state budgetary challenges facing Medicaid in the face of a recessionary economy and the growth in Medicaid spending that is outpacing state revenues. That growth is tied not only to the increased need for services among a growing population of older citizens and people with disabilities, but to increasing numbers of people who have been uninsured or have been dropped from employer-sponsored health plans.

The federal economic stimulus money will provide states relief in balancing their budgets in the short-term but long-term challenges will still loom. Medicare and Medicaid will be among the main drivers of future state and federal spending. Growth in Medicaid costs will double in actual spending, and over the 25-year period of 1985-2010, it is expected to triple as a percentage of total state spending.

But the challenges aren’t just demographic and budgetary. We are also talking about people’s lives and the pain and frustration they experience on a daily basis. This is reflected in the 5,000 Minnesotans with developmental disabilities who wait for home and community-based waivered services. It’s also reflected in the services that some currently receive. We need to create a system that is both sustainable AND is better at meeting people’s needs.

Les Bauer, past president of The Arc of Minnesota and parent of an adult child with Down syndrome, said a number of the facilities that his son has lived in amounted to mini-institutions, with little opportunity for choice or having his son’s needs understood and met. “We must build a political philosophy that puts humanity first,” he said.

Others echoed his call for greater consumer control over their lives and services and highlighted examples where the services didn’t reflect changing expectations and needs. Another concern raised centers on regulations and paperwork that unnecessarily waste money and prevent service innovation.

Summit panelists discussed what a sustainable, effective system would look like. Services focused in the community and away from institutional biases in funding and models were common themes. As one of the panelists, I strongly pushed for more services that are consumer-directed. I was happy to hear a variety of other panelists also emphasize this. Consumer direction has worked well earlier in this decade for many families, and it offers hope for the future.

People from diverse backgrounds were able to make many suggestions to improve the situation, including:

• Realize the importance of family in providing supports and the need to target more resources to them in the future. Families provide support in a most cost-effective manner – plus those they care for often express greater satisfaction with their lives, are more included in the community and have more social contacts.

• Give families and other caregivers more support, through means including caregiver tax credits and greater access to information and advice. Direct support professionals deserve the proper supports and wages to encourage them to stay in the profession.

• Reduce unnecessary regulations and paperwork, which diverts valuable resources away from good services and stifle innovation.

• Technology can provide cost-effective, person-centered services in some cases, improving heath and increasing independence.

• Redefine work and retirement so baby boomers can still work past traditional retirement age to help pay for care.

• Create incentives to purchase long-term care insurance to make sure people get the services they need and relieve pressure on the Medicaid system.

• Adopt a single-payer health care plan.

• Provide better preventive care to delay need for long-term care.

• Increase the use of health information technology.

• Improve integration of various health care services.

• Pay health care providers for performance.

• Create government human service agencies structures and policies that cross disability and aging boundaries. Alex Bartolic and Jean Wood from the Minnesota Department of Human Services (DHS) talked about a common vision, common values, and common goals for both aging and disability. They highlighted work on common assessment tools (e.g., a long-term care profile for use by both populations) and cross-departmental structures—like a newly formed home and community-based service panel to address common problems and issues.

There is no silver bullet to solve all the challenges of sustainability and effectiveness, so all suggestions need to be explored. One difficult question raised is, what, if anything, are we willing to give up for the larger good?

We also need to ensure that any future system addresses disparities between the minority and majority cultures in access and quality of services. A quality health care and long-term system, said Roger Banks of the Council on Black Minnesotans, “needs to include equity and accountability.”

What is needed to move forward? Leadership. Kevin Goodno, former DHS Commissioner, reminded us that “everyone can be a leader”—we don’t need to wait for one person to make a difference.

Those leaders, according to Mark Peterson, need to be constantly looking ways to change the service system for the better, and to push their colleagues and organizations to do the same. We can’t get too comfortable with the way we do things, he said.

Charlie Lakin of the University of Minnesota Institute on Community Integration stres-sed that all of us, no matter what our position and what organization we work for, need to work together. “We can’t fall back into our ‘tribes’ in tough times.”

Different work groups will continue the summit conversations and the dialogue between the senior and disability communities. Even in the face of threats now and down the road, people came out of the event hopeful.

Steve Larson is Public Policy Director for The Arc of Minnesota, one of the March 5-6 Summit’s hosts. Other host agencies were ARRM, Brain Injury Association of Minnesota, Courage Center, Hammer, Mains’l Services, Metropolitan Center for Independent Living, Mount Olivet Rolling Acres, and REM MN.