
Top Tips on Advocating For Your Child with Momvocate Kara Karlson
Podcast: Once Upon A Gene
Autor:Effie Parks
Kara Karlson is a fellow rare disease mama and attorney who is advocating hard in the policy world. She's currently serving on the Governor's Developmental Disability Advisory Council ("DDAC") where she helps set policy and develop programs for the developmentally disabled in Arizona. She is sharing her top tips for becoming your best advocate. EPISODE HIGHLIGHTS Tell me about your daughter and how you are part of the rare disease community. I got involved with rare disease through my daughter. I had an uneventful pregnancy, everything was fine and she was born a healthy weight. Then she was having trouble eating and that got us started down a long road that eventually led to a diagnosis of mosaicism for multiple marker chromosomes. Originally my daughter was diagnosed with failure to thrive, had postcricoid cushion which was interfering with her feeding, and now she has autism, developmental delays and likely intellectual delays based on a duplicate marker chromosome from portions of 17P and 19. Outside of being a mother, I'm an attorney, so I'm a professional advocate and it's provided me a leg up on getting my daughter the care she needs. Where do we start advocating? Make sure you have an open line or communication with your providers. Know that they have an ethical obligation to explain things to you in a way that you can understand so that you know what questions to ask and be a strong advocate. If you're being sent home and you're not comfortable, be assertive and communicate that. Get a concrete diagnosis or as concrete as you can. Get specific, qualifying conditions identified so you can qualify your child for programs and services. There are measurements critical to getting care and ensuring therapy is working. Have benchmark measurements to monitor progress. Always obtain medical records so you have insight into the doctor's thoughts and takeaways. From these records, you can take the data and do your own research and you know what documents to include when applying to insurance, providers or state health agencies. What are your thoughts on managing the financial aspects of medically complex kids? There's usually a cash discount of 50% or more or a prompt payment discount, so ask for those options. The providers normally offer payment assistance, so if you're in a position of financial hardship, you can get in touch with a patient advocate at the hospital for assistance. The key is to stay in touch regarding medical expenses and document everything. How do you ask for referrals? If possible, it's best to ask other people you trust. If your child's condition is unique, reach out to other patient groups to see if anyone can refer you. If there's a long waitlist, get on multiple provider lists and seek out other options while you wait. LINKS AND RESOURCES MENTIONED Finding Happy The Podcast - https://www.findinghappythepodcast.com/ Stronger Together - https://strongertogetherevent.com/ CONTACT KARA Momvocate Website - https://momvocate.net/ Momvocate on Twitter - https://twitter.com/momvocate4lyfe Movocate Email - [email protected] Momvocate Blog - https://momvocate4lyfe.blogspot.com/
Fecha de Publicación: 8 de abril de 2021
Duración: 23 min
Añadir a Playlist

Episodios Relacionados
-
Finding Joy in the Journey: A Guide for Parents of Medically Complex Kids with Amber Pierson & Chelsea Kuhn junio 5, 2025
-
From Beast Games Champ to Rare Disease Warrior: Jeff Allen’s 365-Mile Ruck for His Son’s Creatine Transporter Deficiency mayo 15, 2025
-
GeneDx Launches Cerebral Palsy Genetic Testing Pillar & Discover Snapshot: For Deeper Insights and to Help You Grow Your Patient Community – with Gay Grossman mayo 1, 2025
-
Empowered Kids - Painless Labs :O'Ryan Health’s At‑Home Blood‑Draw Revolution with Tim Coleman abril 18, 2025
-
Navigating the Complexities of Grief: How One Mother’s Grief Birthed a Supportive Community with, Heather Straughter. marzo 27, 2025