I wanted to share some links that have been helpful to our family as we have navigated life with a child who is disabled. Community has been SO helpful and we are blessed to know that we are not alone in our journey with our son. There are many more resources than these, but for now, these are the nearest and dearest to us personally.
https://joniandfriends.org/texas
https://joniandfriends.org/calendar/category/retreats-getaways
https://hopekids.org/become-a-hopekid
https://www.nancyguthrie.com/respite-retreat
If you have a child with a disability and you’re in Texas, there are many waiver programs that you need to sign up for asap. Its free to do, just call the Texas Health and Human Services number at 877-438-5658. The wait list for these programs is extremely long (think 5-15 years long). So the sooner you do this the better. One of the quickest waivers is the Medically Dependent Children Program (MDCP), but I’ll post all the waiver links below if you’d like to read more about them. Our son Gideon is currently on the Deaf Blind Multiple Disabilities waiver program.
https://www.hhs.texas.gov/providers/long-term-care-providers/deaf-blind-multiple-disabilities-dbmd
https://www.hhs.texas.gov/providers/long-term-care-providers/home-community-based-services-hcs
https://www.hhs.texas.gov/providers/long-term-care-providers/texas-home-living-txhml
Once your child is on one of these waiver programs, they will be provided with Medicaid. Until that time comes, you can get Medicaid through something called the Medicaid Buy In Program. I’ll post the link below but before I do, hear me say this. They will DENY you multiple times, so you MUST keep applying. This process was long and there were many tears shed over hours on the phone, but trust me when I say it’s WORTH EVERY FRUSTRATING moment. Since my husband already had a primary insurance policy for our kids, having Medicaid as a secondary meant, we NEVER saw a bill. Once the primary insurance paid their part, Medicaid picked up the rest.
Also these are some books that have been instrumental for me as I’ve coped with the dark seasons of my life. Since Gideon’s diagnosis, I always recommend Nancy Guthrie’s work because she has buried two children with Zellwegers, which is on the PBD spectrum. Nancy DeMoss is another author who inspired me during my Jerry Springer phase of life- I highly recommend her book on Choosing Forgiveness. Also, When God Doesn’t Fix It by Laura Story is one of my all time favorites. She writes from experience about how she faces life even though God didn’t fix her circumstances.
