Ep 8: Facing Uncertainty in Caregiving: IEPs, Social Security, and In-Home Nursing, Oh My!

Caffeinated Caregivers

When it comes to being a caregiver to a medically complex and/or disabled child especially in 2024, life can feel.... uncertain.
Covid-era legislation that helped caregivers in many states is now being rolled back, support that our families and children need to thrive can be taken away at a moment's notice, and the threat of unexpected changes can make planning for our children's futures incredibly difficult. And these aren't just random examples. Erica and Alyssa are both navigating these uncomfortable waters right now.
In this episode, Erica and Alyssa share what's been keeping them from the podcast the last couple of months, the difficult choices they've been making recently, the intricate governement systems they've been navigating, and the state of some caregiving programs across the country.
The conversation gets a little heavy a times, but stick with it until the end! Turns out there is a bright spot in all of this, and that's our collective community of caregivers, and the way that we continue to rally and support each other to improve life for all of us.
In this episode:

[00:00] Intro
[00:57] Why we're qualified to talk about caregiving
[03:24] What's fueling Erica & Alyssa today (both liquid and existential)
[09:59] Erica's unexpected and distressing situation with children's Social Security support
[13:13] A very drawn out separation with Alyssa's family's favorite nurse and how that uncertainty affects decisions around her daughter's IEP transition
[22:42] How sudden changes in personnel affect our kids, who thrive on routines and relationships
[26:28] Erica's own experience navigating her children's IEP recently and the caregivers she relied on to guide her through
[29:42] Some of the changes happening to caregiver programs in multiple states and why the discourse around these changes is so disheartening
[37:42] Why the collective uncertainty makes it harder to weather any change in our support
[41:28] The Bright Spot: Us, as caregivers, continuing to bolster and support each other as we fight together to get the support we and our children need

For the transcript, our blog, links, and more, visit our website: https://www.caffeinatedcaregivers.com/podcast/ep8
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Thanks friends! Talk soon!