Health care can be a problem for people who have Down syndrome because it's so costly. Most typical insurance plans don't have enough juice to pay for the extra therapy that children need as early intervention.
Many states have assistance options provided by Medicaid. Even if you think you make too much to qualify, many of these programs allow a person to qualify based on diagnosis (but you still have to utilize trusts to control the assets a person with Down syndrome might have).
Each and every state may have Medicaid, but it is not all run the same. According to ASHA, “State regulations and standards differ greatly in other areas of Medicaid, including:
provider requirements for Medicaid participation, credentialing, and supervision;
documentation requirements for plan of care approval, criteria for services, authorization, and reimbursement justification;
Medicaid audit process and penalties for errors;
use of the Children’s Health Insurance Program (CHIP).”
Make sure you’re aware of these differences. For example, TEFRA is an optional waiver for children with disabilities that not all states carry, and if they do, they don’t utilize it the same. For example in Arkansas, if a child meets the health requirements, it is accessible for families, no matter their income, on a sliding premium pay scale. However, the way we understand its application may be specific to Arkansas. If you move, you may not have TEFRA at all.
Arkansas also has an amazing option called the Community and Employment Supports Waiver. It has a long waiting list, but children and adults with Down syndrome can apply. It provides all of the services covered by Medicaid and so much more - staff who help in the home as much as 24 hours per day and provide support so that an individual can thrive in his or her own home.
So how can you know what’s available to you? Use the resources below to find out more about Medicaid and how it’s different across the US!
Why is Medicaid different in each state?
Medicaid by State Scorecard
What is a “state plan”?
What are the types of waivers?
List of all waivers by state
Full list of kids waivers by State
What if your state has limited resources? There may be more out there than you know. Look around at state and local resources. There are national programs, state benefits, foundations, organizations, and grants that may help you in a bind. For example, check out this list of foundations that assist for children’s special needs.