Many children who are diagnosed with the genetic disorder known as Treacher Collins Syndrome find themselves placed in institutional living situations away from the comforts of home and the loving support of family and friends. For the Kougl family whose two-year-old daughter Quinn lives with Treacher Collins, this was not an acceptable option. Justine and William Kougl knew they wanted Quinn to grow up alongside her brother Cody and sister, Nora on the family ranch located some 30 miles north of the Wyoming border in rural Big Horn County and since the diagnosis, they have “fought to have her home with us as an entire family.”
On top of the daily grind of raising three children and running a cattle operation, this meant traveling to Sheridan, Billings, and Denver for Quinn to see and be treated by appropriate medical specialists and navigating the byzantine labyrinth of bureaucracy that is the Montana Medicaid program. At one point the Department of Public Health and Human Services even tried to dismiss Quinn from the waiver program under which she was receiving the services such as nutrition assistance, specialized medical equipment, speech therapy, and feeding therapy that allowed her to remain at home.
One of the resources the Kougl’s turned to help them in this fight was LIFTT. As the Center for Independent Living for this region, LIFTT is specifically charged with helping persons with disabilities find access and maintain services that allow them to remain in their homes and communities instead of being warehoused in institutionalized settings. In the words of Quinn’s mom Justine:
“We have been working with LIFTT for nearly a year. LIFTT has been able to provide a wealth of resources to help support Quinn in her development.
The staff members have been amazing at finding out information and providing things such as information about opportunities that relate to Quinn’s situation, Programs coming up, financial support for items insurance will not cover, and especially support to fight for Quinn’s rights.
They have been a strong advocate for helping Quinn to stay on the Big Sky Waiver after she was dismissed. LIFTT accepted the job of being the primary agency to help kids like Quinn receive Waiver services for Medically Fragile Children.”
Note: The Kougl family was kind enough to share their story with us in November of 2017. It is with deep sadness that we announce that Quinn passed away at the age of three on December 17, 2018. Our thoughts go out to the Kougl family and all who loved Quinn.