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While you want the best programs and services for your child with Rett syndrome, you may not know what resources are available within your community, or the laws that protect them.
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Medicaid
Medicaid is a combined state and federal assistance program for those who are disabled, low income, over sixty-five and blind, or recipients of Aid to Families with Dependent Children (AFDC) or Supplemental Security Income (SSI). Although programs vary from state to state, given the severity of disability of girls with Rett syndrome (RTT), there are often ways to qualify for Medicaid, regardless of the family’s income or assets. Your I.R.S.F. Regional Representative can help guide you through this process.
In some states, the state may pay private insurance premiums to keep you off Medicaid. Many states have a program called the Health Insurance Premium Payment Program (HIPP). HIPP allows those receiving Medicaid benefits to have private health insurance plans paid for by Medicaid. With HIPP, Medicaid recipients may receive better coverage and a larger network of health care providers is available.
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The cost of health care has skyrocketed to crisis dimensions in recent years, and paying for health care is an additional burden to families of children with special needs. For many people, obtaining insurance coverage is difficult, if not impossible. Once obtained, the insurance may not pay for all of the child’s needs. Others may find their policies dropped when they move to a new job or have their child’s special needs deemed “pre-existing,” and ineligible for coverage.
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