How Safe is your Family’s Medicaid Waiver?

Repeal and Replace

On March 6, 2017, Congress unveiled its “Repeal and Replace Obamacare” proposal, a plan kept under wraps until that day. With the announcement, many of us were left scratching our heads, wondering if Medicaid services—services that so many families have come to rely on—would be fundamentally altered. Unfortunately, the answer is still unclear.

We know that Congress is scurrying on a new agenda, and there are strong indications that Medicaid may undergo significant changes, potentially shifting to a block grant model. If this happens, it could result in up to a 50% cut in services for Medicaid recipients in Colorado.

While I may not know your specific journey as a special needs parent, I am familiar with the countless steps you take every day. For many of you, Medicaid is the lifeblood of your family’s support system, a critical resource that ensures your child receives the care and services they need to thrive.

Fear of the Pen

And I understand the fear that everything you’ve come to depend on could disappear overnight with the simple stroke of a pen on a government document.

We’ve already seen this happen. Under a low December sun, with the shadow of the limestone dome of the Texas State Capitol building looming large, legislators signed away critical therapies for children with disabilities—services that young, developing bodies rely on to grow and thrive. These cuts recalled a darker time when children’s bodies were twisted with unkind contractions, and there were no hands to straighten their limbs or stretch their muscles, freeing them to walk, sit, and grasp the liberty of movement.

In Texas, Medicaid benefits were cut by 50% within weeks of the legislation’s signing. The ink was barely dry when families were thrust into an uncertain and terrifying new reality, scrambling to find ways to fill the gaping holes left in their care networks.

 What You Need to Know

Medicaid is deeply intertwined with the Affordable Care Act (ACA). States like Colorado and 30 others expanded their Medicaid programs, drawing down federal matching dollars to support a broader range of services. The “Repeal and Replace” efforts in Washington, D.C., are laying out a different path for Medicaid and long-term services.

In the current version of the plan, we might have caught a small break: Medicaid expansion states will continue to receive federal support at current levels until 2020. However, if Congress implements block grant funding for Medicaid, Colorado could face a 50% cut in Medicaid programs. Block grants allow states more flexibility in how funds are allocated. Still, they also come with reduced federal funding, leaving states to stretch limited resources over growing needs.

Like Texas, other states might see this as an opportunity to transition to a managed care model with capitated rates that limit individual allocations. This shift often has little to do with the actual needs of those individuals and more to do with balancing budgets.

As with any new program rollout, confusion has abounded. In Texas, critical services have been delayed, caught up in bureaucratic limbo, leaving families struggling with the painful dilemma of how to care for their children without the support they previously had.

A Personal Reflection

I remember a time when Medicaid wasn’t part of our lives. I was a single, working mother of two, and for the first eleven years of my daughter Mikelle’s life, we received no Medicaid support. Our medical insurance refused to cover any costs related to her disability. But Mikelle never went without what she needed. She had a mother who was determined and relentless in fundraising efforts to pay for wheelchairs, communication devices, and therapies. While those efforts brought good things, they were exhausting and unsustainable in the long term.

Today, I appeal to your survival instincts and ask you to raise your voices—voices that may be quiet but are powerful when unified. It’s time to March for Medicaid.

Call to Action

Call your legislators today, tomorrow, and every day until we know that our young children, our school-age children, and our adult children will continue to have the Medicaid services they deserve.

Thank you to those of you who have already been making calls. Your voices have made a difference. For example, Colorado’s Senator Cory Gardner is on the fence about the GOP’s new healthcare plan. His concern? Medicaid services. Let him know you appreciate his support and encourage him to stand up for Colorado citizens who depend on these critical programs.

Together, we can make our voices heard. Together, we can protect Medicaid and ensure that every person with a disability receives the care and support they need to lead a whole and dignified life.