Financial Help in Dealing With CDH

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Federal Help
Social Security Disability (SSI) checks, Katie Beckett Grants, and other financial assistance. Contact your local Social Security Office and Social Services.

Ronald McDonald Houses
Housing for families of critically ill children. Ask the hospital if there is one close by.

Transport Services
Many hospitals provide free transportation from Ronald McDonald Houses and nearby hotels.

Your church or synagogue can provide religious support and possibly offer some financial assistance.

State Programs
Many states offer medical insurance assistance with programs such as Medicaid/Medical, The Crippled Children’s Fund, and other programs for handicapped children.

Currently, CHERUBS cannot offer financial assistance but we have created a new fund, our CHERUBS Family Assistance Fund, to hopefully assist families in the near future.


Member Advice

Amy Rademaker
"Local chapters of organizations like: Rotary, Kiwanais, Lions Clubs, Shriners etc."

Corin Nava
"Check to see what programs the hospital has available. Mass General had parent rooms to sleep in, a shower facility, a kitchenette for parents to use, a laundry facility, free parking passes for the local garages if your child was there longer than 30 days, free meal trays to breastfeeding moms, and meal tickets for the hospital cafeteria. However, these things weren't mentioned upfront. A lot of it would be mentioned weeks after we were there as an afterthought. I would ask the social worker to look into what services they offer parents ASAP."

Judi Toth
"In addition to the Federal and State Programs mentioned already, here are a few additional programs and assistance available for financially strapped families, especially if you have a sick child, spouse or family member at home:

SSI - Keep on appealing if you get turned down!!!! Request a hearing in front of an Appellate Administrative Judge from SSA. I can't emphasize this enough as I, myself, was turned down 3 times (for 28 separate disabilities, already receiving 90% VA disability and 100% OPM disability) and finally requested a hearing in front of a judge where I was deemed immediately disabled retroactive 3 years! If your child has a learning disability, hearing loss, medical problems that persists after birth, the CHILDREN ARE ELIGIBLE!!! Even ADHD & HDD are considered disabilities. Your child upon receiving SSI automatically becomes enrolled in Medicare and while you may not think you need this now, if you or your spouse were to ever lose your jobs and insurance, or switch jobs, some insurance companies may not pick up your child due to pre-existing conditions and the Medicare is a God-send then. If you say you have insurance now, Medicare actually becomes the Primary and your other insurance becomes secondary and will cover all those co-pays to the different doctors. Some States have no-cost insurance for low/working class people and their children - but you are limited with where you can go, whereas, if you have the Medicare in addition to the State Insurance, you are not quite as limited and don't have to pay quite as much out of pocket expenses. Not all States will allow you both Medicare and their State insurance but some do.

Local Programs, either on the County or City level: WIC (Women, Infant & Children) to help out with formula, milk, protein sources for both mother and children; Food Stamps - don't be afraid of the stigma of going on food stamps! These days food stamps are issued on a debit type card and you pay for the food stamp items on that and your non-food items can be paid for using cash, debit card, etc. The only person knowing you are using the food stamp debit card is the cashier.

Military: You can go to Army/Air Force/Navy Emergency Relief which can assist in grants, especially when faced with the death of a child; and/or grants or low cost loans to help pay bills. You can't use this on a monthly basis but the counselors can assist you with your bills by referring you to a debt consolidator, so that your bills are consolidated into one smaller payment and they can also help with reducing your high-paying interest credit cards and loans at the same time paying that smaller amount. Military members should automatically head straight to their base's hospital counselor and enroll yourself in the Exceptional Family Member Program. This program ensures that the active duty member and family is stationed at a military base that can handle their child's health problem. Many overseas locations have exceptional medical hospitals and DoD schools. Sometimes, during early enrollment in the program, the deployed Active Duty member can return home or be prevented from deploying to war until the child stabilizes while enrolled in the EFMP.

Red Cross: The Red Cross can assist families that are facing medical emergencies during times of natural or other disasters (fires, power outages, floods, etc.) to ANY family, especially if you have a medical emergency. The Red Cross is also the organization to contact IMMEDIATELY if you have a medical emergency and if your spouse or child's parent is at another location than you and your child. They can cut through some of the red tape to get the spouse/parent of a child in a medical emergency to get them in touch with you and possibly assistance in getting them on emergency leave to be with you and your child.

Utility Companies: If your child (or other family member you reside with) is on life-sustaining medical equipment, i.e., oxygen, respirator, etc., contact your utility companies (including phone company) to be placed on their emergency medical list. Normally, what this means is that during a power outage, they will respond to your area first. It also means that if you are facing financial difficulties, they cannot shut off your service. In case of a power outage, ALWAYS make sure you have an old-fashioned telephone (not cordless type) because you can use these phones during a power outage, whereas the cordless phones cannot be used. Also, even if you cannot afford a cell phone, if you have an old cell phone that's service is disconnected or if you have a family member or friend that has an old cell phone (with charger of course), you can still dial 911 from any old cell phone.

Credit Cards - if you have high interest credit cards, call the creditor and explain your medical situation with your child and ask if they can lower your credit card interest if it's high (some card's APRs are up to 29.9%!!! Check your monthly statements for your APR and you may find that what started out as a low interest card was only for 6 months and then jumped up high after that initial 6 months. Most credit card companies will reduce your rate vs. not getting a payment, even if your credit is messed up, especially for medical reasons. Also, check to see if you were enrolled in their insurance program where if you got sick, lost your job, etc., that particular insurance program will pay your monthly credit card payment. It's better to try to work with the creditors directly sometimes and you won't screw up your credit.

Some of these suggestions are also good to know even if your cherub is healthy. You never know when something pops up that can cause chaos in your life!?

Tammy Spohr
"I'm not sure about other states but in California there is:

Medi-Cal - Even with a PPO or HMO you can qualify for Medi-Cal as a second insurance. Sometimes there is a share of cost.

California Children's Services (CCS) - they usually pick up as a third party (after your insurance and Medi-Cal are billed). You have to have Medi-Cal to qualify. They were really helpful when it came to getting Bryston his RSV shots.

In Home Support Services (IHSS) = when you are home with your CDH babe, they will pay you to take care of them, when the care is beyond normal care. They rather pay the parents than hire nurses to do the job. (you have to have SSI to qualify).

The state and system is there to help you. Contact your hospitals Social Worker and ask for help.”

Kara hess
Ohio offers BCMH (Bureau for Children with Medical Handicaps). It is a supplemental insurance. If you don't qualify for it they also offer a cost share program. It's a lot of paperwork to fill out, but worth it.

Family Self Sufficiency (FSS) funding is also available usually through your county health department or board of mental retardation and developmental disabilities. They give out coupon vouchers that can be used for things such as therapy required toys, tools, cups, spoons, etc. It can also be used for thickeners, supplemental food, and therapeutic services. Here in Ohio, one can qualify for up to $400 every 6 months.”

News from CHERUBS

2018 Light Ups for CDH Awareness Day

Buildings and Landmarks in the United States and Canada lit up blue, pink and yellow on April 19th for CDH Awareness Day.  The CN Tower will light up on April 28th in Toronto, Canada.

The following locations lit up for CDH Awareness Day in 2018:


CDH International Telethon on April 19th

On CDH Awareness Day, April 19th, CDH International interviewed families, researchers, doctors and volunteers as they all shared stories, tears and trials as we raised awareness and money for Congenital Diaphragmatic Hernia via live video on Facebook.  We had guests live from around the globe, truly an international day of CDH Awarneess.  The goal was to reach $50,000 over 15 hours during a live Facebook telethon.  Donors were able to make a donation by calling in, donating on any of the member's Facebook telethon fundraisers or directly on the website.  As the telethon closed, CDH International surpassed the goal bringing in $51,388.  This number is on the rise, where the final total will be announced on April 30th.  Facebook fundraisers for the telethon are still ongoing and the charity waits for any checks arriving by mail.


2018 Salt Lake City Bees Game for CHERUBS

On Saturday, April 21, 2018, at Smith's Ballpark in Salt Lake City, Utah, CHERUBS held a CDH Awareness Ballgame. This was the 5th annual CDH Awareness ball game for the charity.  The game has been a yearly celebration of CDH Awareness Month. CHERUBS members, family and friends got together for a great night of baseball, meeting other CDH families and raised a ton of CDH Awareness. Abby Rush, 15 year old CDH survivor, got to throw in the 1st pitch of the night and kick off the celebration for the charity.  Wearing her wings, Abby threw the 1st pitch like a pro and raised a ton of CDH Awareness.


Join the Angel Club and make a monthly or annual donation in honor or in memory of your cherub.

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