Resources for Families

Part of the reason I wanted to start this is I was having issues finding something that gave parents an idea of what resources are out there. I had a hard time finding any one list that gave me options. Below I will start a list of resources I have found, either support resources, financial resources, or anything else I think might help. Note some of these might be for the State of Colorado only, so if you are not able to find this program in your state, I am sorry. I will add and edit this list as I have more information.

Social Security - A child born with a congenital heart defect does qualify as a disabled child in the eyes of social security. When the child is born immediately contact social security and see about assistance for the child.

Child Health Plan Plus - My HR recommended trying to get on this after I stopped work and when my disability insurance kicked in. They said if I qualify it would potentially save me hundreds in health insurance monthly while I am unable to work.

Ronald McDonald House - The Children's Hospital we will have to deliver at has a Ronald McDonald house that can provide housing for those in need. These are nation wide and might be an option for others looking for housing during surgeries or prior to labor. One thing to note is that this is a first come first serve facility. It might not be available when you are there and you will need to find other housing. Also if you use it prior to labor, once you are admitted into the hospital to give birth, the house gives your space to the next in line so you have no guarantees that you will have a place to stay after you give birth and through the first surgeries. Also it is not pet friendly so if you are like us, you will still need to figure long term care out for your animals.

Medicaid - While this is normally completely based on income, if you already are a lower income family, try applying again. Based on the circumstances, they might approve you.

JessiesHeart.org - a website I stumbled across claiming to give support to parents with a child with a CHD. I have not reached out to them, so I do not know the extent of their support offered as of yet.

Children's Heart Foundation - another organization I have stumbled upon that offers support. I have yet to reach out to them as well.

Mended Little Hearts - This is another more emotional support place I found. They have message boards online and support groups in communities around the country.

Speak with your hospital - often time certain hospitals are paired with organizations to assist in this difficult times. They also might be able to help financially through different programs.

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