carolineA little over a year ago, Caroline, my daughter received a golden ticket in the form of a Medicaid Waiver.   This Waiver has drastically transformed our lives. We are able to live again, and not simply survive. I imagine our lives are now similar to people who have typically developing children because the supportive services received under the waiver help us to manage the extreme workload that comes up with raising a child with intense special needs.

5 Ways Our Lives are Better Because of Caroline’s Medicaid Waiver

5.) We are no longer accruing massive amounts of new medical debt. One of the advantages of a Medicaid Waiver is that is comes with Medicaid. Thus Caroline’s large medical bills that are not covered by our private insurance, which most are not, are now billed to Medicaid.

4.) My husband and I can work.  The Medicaid Waiver allows us to hire staff to help provide for Caroline’s needs. We decided one of the best ways to use the Waiver was to hire someone to help manage Caroline’s after school hours. Every day, after school Caroline has at least one, normally two, therapy sessions. The Waiver has allowed us to hire someone to meet Caroline’s bus and then drive her to her therapy sessions.  This is huge because there is not a daycare that will take a child with Caroline’s level of special needs and we can no longer afford to pay a nanny to provide this level of care as we have exhausted all of our savings. Now that we have care for Caroline after school both my husband and I can work fulltime.

3.) The Waiver gave me my husband back. Before the Waiver my husband and I were co-parents – we were not living as husband and wife in any sense of the word. Since the Waiver, we now have the time and energy to connect for a few moments each day. This sounds like something small but when it is not happening it is a big deal. We also have the energy to have sex again. Yes, sex has been made possible by the Waiver. Before the Waiver, one of us was always too tired or too stressed to even think about sex. In so many ways, the Waiver improved my marriage.

2.) We are better parents who are able to spend quality time with each of our children. Before the Waiver we did what we had to get through the day. Many days that meant my older daughter, Vivian’s homework did not get done and most days it meant that we did not take the time to enjoy our children because we were so busy simply meeting their needs. Now we ask about their day, play with them and enjoy the fact that they are in our lives.

1.) I feel like I am a person again, not just a caregiver. I have been able to reconnect with friends and interests that had become distant memories. My life is no longer just about providing the most basic care to my daughter with special needs – it has a greater purpose. I am now a mother capable of caring for all three of my children, not just one. I am a professional with a career, again. I am a wife, a friend, a daughter and a sister – relationships that were lost in the fog of caregiving.

Caroline’s Medicaid Waiver has allowed my family to be a family again. We are able to enjoy each other, and especially Caroline, so much more. It has allowed us to focus on the important things in life. I fear for what might happen to my family if we should ever lose the support of Caroline’s Medicaid Waiver.

The recent Republican proposal to overhaul healthcare in America would fundamentally change Medicaid and in doing so, threaten access to community-based services like those that have helped my family so very much.

“The legislation revealed by House Republicans … is a giant step backwards in the treatment and care of individuals with disabilities,” said Curt Decker, executive director of the National Disability Rights Network. “It caps Medicaid funding which means a sharp reduction in services and availability of this important health care lifeline for children and adults with disabilities. In short, this plan is terrible.”

There is no adequate way to describe the hardship the proposed changes to Medicaid would bring to my family and so many others. If we lose the services that have been made possible by the Medicaid Waiver, I fear for my sanity, the health of my family and my daughter’s future.