Mitochondrial Myopathy
My daughter, age 7, has Mitochondrial Myopathy, confirmed through DNA studies. Her disabilities include developmental delays, failure to thrive, exercise intolerance, severe muscle weakness, and generalized fatigue. Her disabilities are “invisible” and she receives all her medical care on an outpatient basis. Her specialist made a comment that if you had a permanent disability you should be eligible for Medicaid that helps pay what your insurance doesn't. I have looked into social security and medicaid and absolutely everyone says they are income based. Is there or is there not a program to help disabled kids and hardworking families that don't fall into that poverty level?
Texas Mom.
Dear Texas Mom,
Medicaid is a federal program that is managed by each individual state. In order for a child to be eligible for Medicaid services, several conditions need to be met, including type and severity of disability, and family income, as you have discovered. Here is more detailed information regarding medicaid eligibility. Family income limits are expressed as a percentage compared to Federal Poverty Guidelines, and these income limits vary from state to state. Click here for the chart listing annual income limits for percentages over the 2010 FPG.
If your family makes less than 200% of the Federal Poverty Guidelines annually, or you have documentation of out-of-pocket medical expenses that, when deducted from your family’s gross income results in an amount less that 200% FPG, your child may be eligible for services through the Children with Special Health Care Needs program, which can supplement your private insurance benefits. You can find more information here: CSHCN Texas.
There are other ways to find alternate financial support or receive reimbursement for your child’s medical expenses. These include:
- Itemizing out-of-pocket medical expenses for your family’s federal income tax return, see tax deductions for more information, including a comprehensive list of applicable expenses
- Contact your state information service by dialing 211 to speak with public benefit assistance resource specialist. Alternately, you can access the program’s website: 2-1-1 Texas
- Contact private non-profit organizations for assistance with routine expenses (such as nutritional supplements, ongoing therapy, travel and lodging for doctor’s appointments far from home) or one-time expenses for equipment or services (wheelchairs, vehicle modification, ramps, second opinions out-of-state, special diagnostic tests not covered by your private insurance). Two potential sources of support are the United Health Care Children's Fund and the First Hand Foundation.
The figures given as the 2010 Federal Poverty Guidelines apply to every state, but several of the resources listed here are only applicable for Texas residents. Here is contact information to help you locate programs in your own state: Medicaid. Several states have Medicaid voucher and/or waiver programs for individuals who meet special criteria; the Complex Child magazine described these special programs in this article: Medicaid waivers You can locate your state’s CSHCN program by following this link: CSHCN
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