Not diagnosis specific? You got it.
Works with other groups? With joy!
These are some of the most common questions we get about the Patient Advocacy Program. And they make sense. For this blog, I wanted to give some real life examples of how it all works together for Wyoming families who need support in various ways while they care for a child born prematurely, with a chronic illness or medically complex condition.
I received an email from a nurse case manager at a hospital in Denver. A family was preparing to discharge with their child, but couldn’t until they found a nurse on duty to help care for their child’s medical needs. In Wyoming, this can be a very challenging hurdle to overcome. The nurse case manager and I shared ideas of who to try and after many calls and emails, we were finally able to connect them to the Department of Health who were determined to make it work. The family was able to discharge back to Wyoming knowing that they had the medical support they would need for their precious child.
A dad emailed me in need of help with rent and groceries because they had the added expense of traveling out of state for several days of medical appointments for his child. The gas, doctor bills, and missed work days left them short when it came to other needs in the budget, but missing the appointments was not an option! We worked on several options not only for the upcoming month’s rent, but knowing this was going to be an ongoing struggle, we worked on options for the future that would always involve these appointments. We found several local food pantries that could help supplement the grocery bill. To help with rent, he applied for the Emergency Rental Assistance Program. We reconnected with the Department of Health program called Children’s Special Health to make sure he understood how they could help with some of the medical costs, care coordination and more.
A school nurse called me on behalf of a mother who was hit hard 2 days before with a difficult diagnosis for her child. I was able to connect with mom and be a listening ear as she processed her grief over the news. When she was ready, I was able to connect her to a disease-specific organization to help walk her through the days, months and possibly years ahead with almost everything they would need.
A social worker at a hospital in Denver called to see if there were any CNA course options for a mom who wanted to be able to care for her child at home herself when they got to come home. I was able to send several options along with possible scholarships and tuition cuts so that she could make her decision.
For several months, I was in contact with a mom walking through very complex medical conditions in one of her children, along with needing help with her older kids that needed some care, as well. We found counseling options, because it is HARD to manage everything in life on our own, travel expense assistance, grocery assistance, therapy support and connections to other families that have children with disabilities to be able to have that understanding and knowledge all through a local program that could help her wade through the State waiver program. We even found a wagon that accommodates her child’s specific needs. There is nothing too big or too small when it comes to caring for the whole family.
I’ve helped find diapers, toiletries and clothes for families when they were emergency life flighted out of state, medical contacts for eye care, childcare, the list goes on! If you have any questions about what the Patient Advocacy Program is and if it could be a help for your family - please feel free to call me at (307) 333-1273 or email me at firstname.lastname@example.org. I’d be happy to hear your story and work with you to connect you to the resources that can help your family during your medical journey.
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