A Voice of One for Many

Authors: Christine Givens, Systems Family Leadership Graduate, DBMAT Board Member, and 2025 Trailblazer Award Recipient

The purpose of this article is to show that a story and a voice do matter. This is just a snippet of our family’s story, a story of how our advocacy began with a late-night letter and evolved into a five-year journey to reform a very small part of a system that fell short for some of its most vulnerable Texans. 

To fully explain everything we went through would require writing a book. Throughout our daughter’s life, our faith and support from God, family and community have carried us through. This journey was filled with many moments of guidance and connection, and we met incredible people who helped us achieve what once seemed insurmountable. We are so grateful to the “village” that evolved from this journey. 

Skye’s Story: From Survival to Advocacy

Our daughter, Skye, was born prematurely at just 24 weeks. Weighing only 1 lb., 6.5 oz., she faced immense challenges, including a bilateral brain bleed, heart surgery, retinopathy of prematurity, seizures, cerebral palsy, glaucoma, respiratory issues, severe central/obstructive apneas, and many other medical issues throughout the years. 

Skye was not expected to survive. Her body withstood countless assaults as an “immature premature” infant in the NICU, enduring a number of infections and detrimental side effects from drugs that were necessary for her survival. As a result, Skye would forever be considered medically fragile, deafblind, non-ambulatory and have limited communication due to dual sensory loss. As Skye aged, her medical needs only increased. She finally accessed Medicaid’s Medically Dependent Children’s Program (MDCP) through Rider 28, which provided in-home attendant/nursing hours. Shortly thereafter, Skye was moved to receive the specialized therapies under the Community Living Assistance and Support Services (CLASS) Medicaid Waiver with continued nursing hours provided through the Comprehensive Care Program (CCP).

All of these acronyms meant that her medical needs were being met. Despite the odds, Skye had grown into a vibrant young woman! 

In 2019, however, as Skye approached her 21st birthday, everything changed. Under Texas Medicaid’s rules, she was no longer considered a “child”, and her services were set to transition to the adult Medicaid system. Because of advocacy work in the past, children in Texas were entitled to receive all the services deemed “medically necessary” through Medicaid. The same was not true for adults. The adult system imposed restrictive cost caps on services, which pushed many medically fragile individuals into institutions.

The Challenge of Turning 21

For individuals like Skye, turning 21 can feel like falling off a cliff. On the last day of their birthday month, they receive nursing and attendant care, therapies, and resources tailored to meet all their needs. Then, the very next day, all of those services are drastically reduced or eliminated. In 2013, part of the Medicaid Managed Care bill directed the Health and Human Services Commission to research the feasibility of a “hospital level of care” waiver. This type of waiver would allow the handful of adult Texans, like Skye, to exceed the cost cap for services and use Medicaid dollars to help cover the cost. By 2019, however, there was still no waiver or program to meet Skye’s needs. The system had failed medically fragile people. 

Skye’s medical needs had not changed, her diagnoses had not changed, but she was forced into a system that refused to meet her needs solely based on a date on a calendar, her birthday. Without the “hospital level of care” waiver, very few people were allowed to exceed the cost cap and access critical care. 

This transition lasted for months, and Skye’s case became a “perfect storm”. 

A Letter That Sparked a Movement

On the evening of Feb. 27, 2019, an important decision was made. I couldn’t risk Skye being institutionalized. She would remain in the only home she had ever known, but that choice also cost us a lot of incredible nurses, vital nursing hours and therapies. 

I was her mother, and I couldn’t protect her services. I was so disgusted and discouraged—so I sat down and wrote Skye’s story. I described Skye’s journey, the critical support she required, and the devastating impact of losing those services on her and the family. On March 1, 2019, at the age of 21, Skye transitioned into the adult Medicaid system, under the cost cap. That letter/her story became the foundation of a campaign for change that would take five years to accomplish. 

The Texas Legislature was in session, and Skye’s story was delivered to key legislators to push for a “Medically Fragile Waiver” (similar to “hospital level of care”) to meet the needs of individuals like Skye.  

The Star+Plus Waiver was not developed to handle the most “medically fragile” Texans.  Services are cut in order to keep people below the cost cap, and the services they keep cannot adequately cover their nursing needs. The rationale for cutting services is flawed. It’s infuriating to know that medically fragile Texans, whose services are cut, can actually end up costing the state more money! Hospitalization or placement in an institution is often more expensive than the in-home care most individuals were receiving before they turned 21.  

Advocating for Systems Change

Our advocacy wasn’t easy! Meetings, emails and calls with legislators’ staff, Medicaid officials and advocates consumed our days. The stress and uncertainty were overwhelming, but giving up wasn’t an option. The 86th Texas Legislative session was in full swing when we started on March 1, 2019. Senator Kolkhorst, Representative Klick and their staffs were heroes in getting the “Medically Fragile Option” included in House Bill 4533 and passed through the legislative process. The Governor signed HB 4533 into law and sent it to the Texas Health and Human Services Commission (HHSC). 

Unfortunately, passing a bill does not equal fast change. I worked closely with Ginger Mayeaux Clasen, an extraordinary mentor throughout the entire process, and several other advocacy heroes, such as Susan Murphree, to follow HHSC progress for the next 15+ months. We remained engaged as they researched and developed the Option. We knew that the Option would ultimately save Texas money by utilizing federal Medicaid dollars instead of general revenue dollars. Using Medicaid to cover services that exceed the cap is the main benefit to having the Option. 

The next hurdle was getting the Center for Medicare and Medicaid Services (CMS) in Washington D.C. to approve this Option, a necessary step before Texas could implement the change. However, addressing CMS’s questions took time. Unfortunately, in January 2021, another perfect storm arose: the Option became entangled in federal “politics” where it remained stalled with CMS for two and a half years.  

In June of 2023, CMS reinitiated discussions with HHSC. On January 4, 2024, I received the long-awaited email: “IT WAS FINALLY APPROVED”. CMS had given its approval, and the final step was for HHSC to implement the Medically Fragile Option into the Star+Plus Waiver.  

Looking Ahead

Our story doesn’t end here. Families like ours are still advocating for a Medicaid system that values the dignity and well-being of all individuals, including the medically fragile, regardless of the cost of care. We hope our experience inspires others to raise their voices and join the effort for systemic change.

Skye is surrounded by some of the knitted scarves that are part of her business, “Under the Texas Skye.”