Financial Help and Free Services When You Have a Child With Down syndrome
When Alice was first born and suspected to have Down syndrome, so many worries were racing through my head. Would Lucy be OK? Would Alice have a lot of health problems? Would we be able to handle a child with a disability? What did this mean for Alice, Lucy, our marriage, our family? And finally... How are we ever going to afford everything she will need?!
My assumption at the time was that children with Down syndrome were a financial burden on a family. I assumed she would have lots of health problems and need lots of therapies. I assumed that this would all be extremely expensive.
We are not rich by any means. Tim works in IT and I'm a stay-at-home mom. How would we ever be able to afford everything I assumed Alice would need?
A few things...
1.) I clearly had no clue what I was talking about. Down syndrome does not necessarily mean lots of health problems and lots of therapies. It can... but most of the time, it does not. I knew nothing about Down syndrome at that time... hence my ignorance about the topic.
2.) There is so much financial help available for families that have a child with Down syndrome... just in case you need it. I want to get into that now. Hopefully this helps a family out there who's wondering how they will ever be able to afford a child with Down syndrome. (Hint: You can.)
Financial help for families that have a child with Down syndrome
If your child has health problems due to Down syndrome (heart conditions, thyroid issues, etc.), there are lots of financial aid options available to help you pay for anything associated with these health problems. There are a few steps you have to take to get approved for one of these options.
Step 1: The first step of acquiring financial help for your child with DS is to apply for Supplemental Security Income (SSI).
SSI is a federal income supplement program funded by general tax revenues. Click here to apply for SSI.
If you get denied for SSI (like we did), the next step is to apply for Medicaid.
Step 2: The second step of acquiring financial help for your child with DS (if you get denied for SSI) is to apply for Medicaid.
Medicaid is a program that provides health coverage to millions of Americans, including people with disabilities (including Down syndrome). Medicaid is administered by states, according to federal requirements. Click here to apply for Medicaid.
If you get denied for Medicaid (like we did), the next step is to apply for BCMH.
Step 3: The third step of acquiring financial help for your child with DS (if you get denied for both SSI and Medicaid) is to apply for BCMH.
BCMH stands for Bureau for Children with Medical Handicaps. This program is a healthcare program from the Ohio Department of Health. BCMH links families of children with special healthcare needs to a network of quality providers and then helps families obtain payment for the services their children need. BCMH is a state-administered program. BCMH receives funding for services from our tax dollars. At its core, BCMH promotes early identification of children with certain conditions and treatment of those children by appropriate healthcare providers. Click here to apply for BCMH.
After being denied for SSI and Medicaid, we did get approved for BCMH! BCMH is a secondary insurance (secondary to our main employer-provided insurance). This means that it covers anything our primary insurance does not cover for Alice. Since being approved for BCMH, we have not had to pay anything out of pocket for her! Even her well visits at the pediatrician are taken care of, and now we never even have a co-pay for her. (Yes, she is less expensive than Lucy!)
Note: BCMH is only a program honored in the state of Ohio. If you live elsewhere, however, you can contact BCMH and see what similar program is available in your state.
Shortly after Alice was born, a case worker in the hospital told me that Alice would have to be evaluated by our local early intervention team through Help Me Grow. I didn't know what Help Me Grow was at the time, but I know all about it now!
Help Me Grow is Ohio's evidence-based parent support program that encourages early well-baby care, as well as parenting education and therapies, to promote the comprehensive health and development of children. The early intervention component of Help Me Grow is a statewide system that provides coordinated early intervention services to parents of eligible children under the age of three with developmental delays or disabilities. Down syndrome is an automatic qualifier.
After Alice was evaluated at just a few weeks old, it was decided that the only therapy she needed at that point was physical therapy. (This is because most babies with Down syndrome have at least a mild degree of hypotonia [low muscle tone].) Help Me Grow assigned us a physical therapist who came to our house every other week to work with Alice and make her stronger. This has made all the difference in the world!
If you're wondering about the cost of this therapy, it's absolutely free. It's a state-provided service that is completely paid for by tax dollars. No cost to us! Plus, the therapists come to our house. We don't even have to leave!
You can learn more about Help Me Grow here.
Note: Help Me Grow is only a program available in the state of Ohio. If you live elsewhere, however, you can contact Help Me Grow and see what similar program is available in your state.
College savings funds
We have a College Savings 529 plan for Lucy, and now we have a savings plan for Alice too. For any child who has a disability of any kind (Down syndrome included), he or she can get a STABLE Account.
A STABLE Account is a tax-free savings plan that offers nationwide enrollment for people with disabilities. Instead of a traditional College Savings 529 plan, a STABLE Account can be used for college (if the person goes to college) or anything else post-high school (if the person does not go to college). We have a STABLE Account for Alice. If she goes to college, the money in the account will be used for that. If she doesn't go to college, the money in the account will be used for living expenses, housing, continuing ed classes, etc.
You can learn more about STABLE Accounts here.
Note: STABLE Accounts are only available in the state of Ohio. If you live elsewhere, however, you can contact the team at STABLE Account and see what similar program is available in your state.
In conclusion, hopefully you've learned about all the financial help and free services available to families that have a child with Down syndrome. If you have a child with Down syndrome and you're not sure how you're going to afford everything, don't worry. You will!
Since being approved for BCMH, Alice has actually been a less expensive child than Lucy. And with her free therapies through Help Me Grow, having a child with Down syndrome has been absolutely no financial hardship for us at all. There is always a way to receive some help!
Note: You can read more from Ann by following her blog, Wonderland Mommy, by clicking the link below.