Our 24-year-old daughter has Down syndrome and receives assistance of Direct Service Workers, or DSWs, through Louisiana’s New Opportunities Waiver. After 10 years on a waiting list, DSWs help make it possible for Brooke to live at home, hold a part-time job and be active in our community. DSW support frees my wife and me to work. This state program works well for us.

But a 2014 state report indicated 54,000 disabled or aged Louisianans occupy waiting lists for home- and community-based services. Two thirds get no assistance as they wait. The 54,000 and their families struggle to work, provide care, pay for medications and attend medical appointments. While they fight to avoid institutionalization, Louisiana’s Legislative Auditor indicates Louisiana pays over $15 million a year for empty nursing home beds.

The 54,000 had hope in a recent two-year planning project to bring Medicaid Long Term Supports and Services (MLTSS) to Louisiana. Such programs haven’t been perfect, but MLTSS saves money and enhances care in many states. MLTSS can rebalance care between institutions and people’s homes, and can shrink or eliminate the 54,000 person waiting lists. Planning efforts for MLTSS involved diligent work, tens of thousands of hours and millions of dollars spent by staff at the Department of Health and Hospitals, the Office of Aging and Adult Services and the Office of Citizens with Developmental Disabilities. Managed care companies invested thousands of hours and spent millions of dollars preparing to respond to the Requests for Proposals. Suddenly, overnight, MLTSS program plans were scrapped by the Jindal administration. So the 54,000, and their family caregivers, continue to wait on a list that grows longer each day. They grow ever closer to having to choose institutionalization.

There are forward-thinking, caring people in DHH, OCDD, OAAS and in elected office. Kudos to progressive provider and payor organizations whose 21st-century care can enhance the lives of the 54,000. New Opportunities Waiver caregivers help my daughter to participate in the lives of her nine nieces and nephews, to swim and run in Special Olympics and to attend classes in a unique university program at the University of Louisiana at Lafayette. The nation is moving away from institutions to support the aged and infirm in their homes and communities. Keeping families together celebrates diversity, inclusion and aging in families and communities. Louisiana’s next governor needs to know, we can do better for the 54,000.

In the interest of transparency, I am staff executive for the statewide trade association representing skilled home health agencies, a different type of provider from the DSWs’ home and community based services.

Warren Hebert

doctor of nursing pratice, registered nurse