06/29/2012 09:37 am ET Updated Aug 29, 2012

A Sigh of Relief

While waiting for the Supreme Court to rule on the Affordable Care Act I thought often of Katie Beckett -- a woman I have never met, whose voice I have never heard, and whose picture I have seen only once. I usually thought about the simple activities Katie must have engaged in -- a young girl playing in her yard or getting ready for her first day at school. I thought about Katie engaging in these simple activities because by engaging in these rights of childhood that most children take for granted Katie broke new ground for thousands of children with disabilities by her ability to participate in Medicaid and live at home.

Katie was born healthy but contracted encephalitis when she was only 5 months old. Although she would remain dependent on technology to help her breathe for the rest of her life, Katie survived. After a long hospital stay Katie's doctors finally told her parents that although she was stable enough to go home. This should have been the end of the story but Katie could not go home. At that time, no private insurance company would cover Katie's needs and Medicaid was only available to children whose parents were impoverished or who were hospitalized or institutionalized. Katie seemed doomed to live her life confined to a hospital room isolated from her community.

Unwilling to accept this reality for their daughter, Katie's parents fought for her right to have the medical support she needed to stay alive at home. As a result of their efforts, Katie broke new ground by being the first child to be granted a waiver of Medicaid income eligibility requirements and be eligible to receive Medicaid benefits while living at home. Ever since Katie established this right such programs have been referred to as "Katie Beckett waivers" and thousands of children who would otherwise have been permanently hospitalized or institutionalized have able to live at home with the support Medicaid provides.

Katie died in May, having lived a full life surrounded by friends and family. The challenges to the Affordable Care Act that were raised in Katie's last days made me think about how the world would be different if Katie had not existed, if she had never gotten sick, and if her parents had not fought so hard for her to merely leave the hospital and come home to live with them.

My daughter is one of the thousands of children who is able to live at home because of a Katie Beckett waiver. Because of the severity of the multiple disabilities caused by daughter's rare genetic disorder she is completely dependent on others for her care. Before I learned about Katie Beckett waivers worries about what would happen if my husband lost his job and we could not obtain health insurance for my daughter -- at any price -- kept me up at night. I considered selling our house and car and spending our hard-earned savings on a ridiculously luxurious vacation so that we could meet the income eligibility requirements to participate in Medicaid. I even discussed my fears with a member of Congressman Roscoe Bartlett's (R-MD) staff during an Easter Seals lobby day. The staff member's response was that we should ask doctors to donate their services, destroying my daughter's dignity and making her life dependent on the willingness of doctors from a staggering range of specialties to volunteer their time and perform services without compensation. I left the office with visions of going around the city begging for someone to perform the surgery my daughter needed to preserve her hearing and prevent infection in her brain.

We are fortunate that the District does not have the long waitlists other states do for receiving a Katie Beckett waiver. We are fortunate that under the Katie Beckett waiver we have never had to argue for much-needed medical services and equipment as we often found ourselves doing with she was only covered by her private insurer. We are fortunate that under the Katie Beckett Waiver she will not reach a lifetime limit on the vital therapy services she receives that are helping her learn to walk and communicate though using pictures. Providing Medicaid services to children with disabilities is one thing the District does right.

Katie's story and my family's story are inextricably tied together. Both of our families would look very different if the government had not stepped in to provide services where the private sector would not. Our stories show clearly that many individuals rely on health insurance provided by the government because private insurers are more concerned with profit than with the health and well-being of the people they insure. With yesterday's Supreme Court ruling on the Affordable Care Act I can breathe a sigh of relief knowing that we are step closer to everyone who needs health care being able to receive the care they need, my daughter will always be able to live at home, and that I will not need to beg anyone to provide medical services for my daughter.