Talynn Gurganus is a sweet little two year old living with Bohring-Opitz Syndrome. With this syndrome comes many other symptoms such as; missing part of brain (P-ACC); feeding difficulties (G-tube); very slow growth (FTT); developmentally delayed; birthmark (flammeus nevus); nearsighted (myopia); prominent eyes; low muscle tone (hypotonia); recurring respiratory infections/pneumonia; silent aspiration; unable to communicate verbally; multiple hospitalizations; seizures; sleep apnea; abnormal hair density & length.
During the first year of Talynn’s life she was hospitalized every month which caused Taylor, Talynn’s mom, to have to stop working in order to care for her. After multiple surgeries and hospitalizations, Talynn’s parents decided to learn how to use the medical equipment at home to reduce hospital stays. Talynn has oxygen, chest PT vest, nebulizer, and deep suction machines at home. She started receiving skilled nursing services through the CapC program in July 2015. Talynn has amazing skilled nurses (LPN/RN) that her parents feel comfortable with. This has allowed Talynn’s mom to start looking for jobs so she can return teaching in August. Skilled nurses allow Talynn’s parents to both be out of the house because if something went wrong the skilled nurses can administer appropriate task to help Talynn.
This past week, Talynn has been denied skilled nursing because Talynn’s ADL needs and GI tube feedings can be delegated to a PNA (CNA). This means that Division of Medical Assistance (DMA) believes Talynn can be cared for by someone who cannot give medications nor administer or adjust oxygen. Talynn’s respiratory system is weak. She has had pneumonia four times and multiple respiratory infections. During these episodes, she requires various breathing treatments, oxygen, chest PT, and deep suctioning. Every night and morning Talynn has to wear oxygen, if not her oxygen levels would range from 82-89. The closes ambulance to her house is a minimum of 10-15 minutes. Talynn would go 10-15 minutes without appropriate oxygen if her skilled nursing is denied because a PNA cannot help her. Respiratory is the leading cause of death for children living with Bohring-Opitz Syndrome.
Talynn’s parents are in the appeal process. They will first go through a mediation period and if it is not resolved they will then have a hearing. If the case is not resolved during the mediation period Talynn’s mom will start a petition and will need your help signing. Stay tuned for the next update on the mediation period which should take place in the next 10-20 days.
Feel free to contact Taylor Gurganus with any questions, comments, suggestions, or concerns. Thank you for the love, support, and prayers!
DMA proposed changes to the CAP/C clinical policy that would devastate medically fragile children and their families. DMA claims to have heard our families’ concerns but has yet to adequately follow up. Meanwhile, CAP/C children continue to lose services.
DMA is not consistently applying current policy. Our advocacy group contacted the Centers for Medicare and Medicaid Services (CMS). CMS was clear to DMA that NO policy changes are allowed during a waiver extension. However, DMA then illegally changed policy on home and vehicle modifications by now requiring children to be in the program for 365 days before they are eligible.
DMA must take responsibility for their decisions and notify families in writing when changing how policy is applied. And, they must stop changing policy during this waiver extension because it goes against CMS requirements.
Please, hold DMA accountable to protect North Carolina’s medically fragile children.
Thank you for your prompt attention to this matter.
Advocates for Medically Fragile Children of North Carolina
If you want to help advocate for the Medically Fragile Children of North Carolina please copy/paste the information in the box approve and email it to the following people: