Nearly overnight, the state is back to where it was almost 30 years ago with over 20,000 people on Medicaid Waiver waiting lists. (Getty Images)
Summer is supposed to be a time of enjoyment, relaxation and fun. But this year is different for thousands of families across the state who depend on Medicaid waivers for critical home and community-based services for their loved ones with intellectual and developmental disabilities (IDD), including complex medical needs.
On July 1, the Family and Social Services Administration replaced the Aged and Disabled (A&D) Medicaid waiver with two new waivers – Health and Wellness (H&W) and PathWays for Aging — both in the works for years but with new policies that are concerning.
Last December the State announced that Medicaid was overspent by nearly $1 billion, partly due to the lack of oversight of the Division of Aging. The Division was working outside the scope of the A&D waiver as approved by the Centers on Medicaid and Medicare Services (CMS). Rather than taking a thoughtful, well-planned approach, the state instead blamed families and made changes that will impact the lives of people with complex medical needs, lives that are already difficult and often too short.
The decision to not allow legally responsible individuals to provide attendant care services is disrupting the lives of many on the H&W and PathWays waivers. Families were given the choice to either find often nonexistent alternative attendant care providers or continue to provide care through a service not equipped to address the needs of those with complex medical needs.
As the transition to new services began on July 1, many families already living in a stressful situation found providers were not ready and did not have critical services in place. Some families are still waiting on transition plans and formal notices from their case managers.
Going backward
Approximately 1,100 people over the age of 60 shifted to the PathWays Waiver. That transition has also been difficult. Some are still waiting to be contacted by their care manager and/or their new Managed Care Entity (MCE), leaving them in the lurch as they still need services that allow them to live safely at home. Wait times on hold to talk to someone at their MCE can last for over an hour, only to be disconnected and needing to start the process all over again.
Nearly overnight, the state is back to where it was almost 30 years ago with over 20,000 people on a Medicaid waiver waiting lists. How did we get here? Over the last two decades considerable progress has been made in Indiana’s support system for people with disabilities, progress that other states admired and tried to model. Progress has eroded quickly over the last 9 months. State leaders need to get a handle on this as soon as possible. Medicaid waiver programs for people with IDD and physical disabilities are critical to keeping them out of institutions and with their families, or, for adults, living more independently. Waiver programs greatly enhance quality of life at a far lower cost than the alternative.
Our state officials should make every effort to maximize home and community-based waivers and ensure they offer a broad array of services. Indiana should not be proud of the fact that we are going back in time to the days of thousands of people on waiting lists for services and people waiting multiple years to get the help they need and qualify for now.
I do hope our potential new state leaders are watching, learning, and most importantly, planning to get in and address this dire situation.
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