Video: Gloria’s Family Relies on Medicaid for Life-Saving Health Care

Leslie and his family live in Oregon. They depend on Medicaid to care for their daughter, Gloria. Gloria receives home-based health care services through a special Medicaid waiver made possible by the Affordable Care Act. The Community First Choice (CFC) 1915 (K) Waiver allows states to provide home and community-based services and supports to eligible Medicaid enrollees. Since 2010, five states have implemented it. With proposals in Congress to cut Medicaid, programs like the K Plan Waiver are now at risk of vanishing. 

Leslie shared his story with us:

“I am the father of Gloria, a happy, vibrant 3 ½ year old with a rare de novo syndrome called Cardio Facio Cutaneous Syndrome. There are 450 diagnosed worldwide. CFC Syndrome causes Gloria to have seizures, need to be tube fed, have Cerebral Palsy, and be suction dependent. She requires intensive, round-the-clock care.

The proposed cuts to Medicaid would force our family into an impossible situation. My mother helps us while my wife and I work multiple jobs, but we desperately need the support staff and nurses who help us keep Gloria at home. Without them, we would be forced to consider full-time residential treatment, where Gloria would lose access to the services that are helping her develop. Unfortunately, residential nursing facilities are over $180,000 a year and aren’t covered by private insurance.

Needless to say this was a difficult challenge for my family to cope with. Yet, there is a giant silver lining in the supports Gloria received through the Community First Choice/1915 K Plan Waiver. Because of the K Plan Waiver, Medicaid is able to pay for vital services that aren’t covered by traditional private insurance, without bankrupting our family.

Medicaid pays for care that has helped Gloria blossom

The Community First Choice/K plan and its services completely changed my family’s existence. The K Plan provides assistance to Gloria medically, as well as providing respite care, and an opportunity to be included in her community.

With the support of her personal support worker for tube feedings and Gloria’s other medical issues, we were able to find places in which Gloria would have the opportunity to interact with other children her age in a safe setting. We had searched for months, and without the supports of the K plan we certainly would have never found somewhere that Gloria would have such opportunities, because of her challenges.

Since then Gloria has blossomed learning to interact with other children her age.

Her vocabulary has more than tripled, which was especially exciting given many children with her syndrome are non-verbal. She has received gait training and she has made progress in standing.

Gloria still has challenges, but with the support that Gloria’s personal support workers, case manager, disability services brokerage, community services, therapists, and the state of Oregon provide to her through the K Plan my family is helping Gloria to not just survive, but thrive in her community.

Loss of Medicaid support would bankrupt Leslie and his wife

Losing the K Plan [Medicaid] means our daughter’s entire life would be upended and we would be bankrupted.

Lawmakers seem to determine to gut every program that helps her.

As a parent of a child with special needs, there is no greater desire than to know that your child is part of their community, and that people in their community have compassion for your child. It is programs like the K Plan that give parents hope that once they pass away and are no longer here to help their disabled child there will be those in the community that will ensure that their child is cared for and loved.

Visit the Protect Our Care page to join the campaign to stop Congress from cutting funding for affordable health coverage. Do you have story to share or do you know someone who does? Submit a story here.