Lia Tremblay
Thanks to Lia Tremblay for this valuable information!
If your child has been diagnosed with a disability, you may find yourself dealing with unprecedented financial stress. Even when insurance covers all of the specialist visits and therapy appointments, those copays can add up to thousands of dollars each year.
Help may be available, in the form of an EDCD Medicaid waiver. This is different from the Medicaid we usually hear about, in that it doesn’t consider a family’s income at all. It’s meant to assist a person with a disability, regardless of how much money her family makes.
Background
A little background: EDCD stands for “Elderly/Disabled, Consumer Directed.” The first bit means that it was developed to help people who are elderly or disabled, and the second part means that the consumer (the person with a disability, or her representative) chooses the provider.
The waiver was developed as a way for families to avoid putting their loved ones in institutions. It’s difficult to imagine putting a toddler in an institution, but before the waiver it was sometimes the only way to make sure a child with a disability got the care she needed— it was just too expensive and exhausting to give at home.
Because of that first “D,” you’ll need a diagnosis that confirms the child’s disability. In some cases, we avoid diagnosis because we don’t want to “label” our children—that’s understandable, but think of diagnosis as less of a label and more of a ticket to necessary services. (A child with a speech delay and sensory issues may not qualify for the help he needs; that same child, with a diagnosis of autism, may find a whole lot more help.)
In addition to covering the things your insurance does not, the waiver offers payment for people you hire to care for your child. That might be just what you need to return to work without worry, or enjoy a regular “date night,” or just get a break from a high-stress situation and recharge your batteries.
How to Apply
Now, here’s how to apply for it:
- Find your local Department of Social Services (DSS). Go there, and ask for an application for adult Medicaid.
- Complete the form on behalf of the child (remember, any questions about income apply to the child, not the family, so will probably be answered with “zero”).
- Before returning the form, at the top of the front page write, “EDCD waiver for a child.” This lets the person reviewing the application know how to proceed.
- Once your application is reviewed, your child will be scheduled for a visit by a social worker from DSS and a nurse from your local Department of Health. They will observe your child and ask you questions about her care.
(A note about this visit: By now, you may have developed a pretty brave face about your child’s condition. You may be in the habit of raving about her progress and showing others how well you are handling things. Go ahead and let that façade down during this visit—they need to know what’s hard about caring for your child, how different she is from her peers, the things she cannot do, how the rest of the family is affected.)
- Based on their input, the application will be approved or denied fairly quickly. If it’s denied, you’ll be given information on how to appeal that decision.
Once approved, you will receive a Medicaid card. This becomes your child’s secondary insurance, covering what your insurance does not (goodbye, copays!). You will also receive a list of service facilitators available to you—once you choose one, that person will talk you through the steps of choosing and hiring a care provider so that you can take a well-deserved break.
