Medicaid and Medicaid Waivers

Every state provides some form of a Medicaid program to assist families who are low income. Unlike private insurance, these programs are required to pay for tube feeding supplies, formula, and equipment if it is medically necessary. The income requirements vary by state, and your state’s information can be found through the Kaiser Family Foundation Medicaid Eligibility page.

In addition, every state has a program for low to mid-income families as part of the Children’s Health Insurance Program (CHIP) or Medicaid expansions. The names of these programs can be found on the Kaiser Family Foundation CHIP page.

Other Medicaid Programs and Waivers

Most states also offer Medicaid programs to assist families of all income levels to access Medicaid. Many of these programs are available to children with disabilities or medical conditions, regardless of their family income. All provide full access to Medicaid, and some provide additional services not typically available through Medicaid, such as home and vehicle modifications.

These waivers can be used as stand-alone insurance, or as supplemental or wrap-around coverage for children who already have insurance. When used as wrap-around coverage, Medicaid waivers pay for a number of out-of-pocket expenses families encounter, ranging from copays to covering medical expenses when maximums have been met with primary insurance. Medicaid waiver programs may also cover additional therapies or medical equipment not covered through insurance.

There are many different types of Medicaid programs, including the following:

  • TEFRA Programs (Katie Beckett Programs)
  • Home and Community Based Services Waivers (HCBS Waivers or 1915(c) Waivers)
  • State-Based Programs
  • 1115 Demonstration Waivers

While TEFRA (Katie Beckett) programs are similar to each other, the other types of waivers vary dramatically in eligibility, population served, number of spots available and services offered. For example, some states only serve children with developmental disabilities, while others focus on children with medical technology such as feeding tubes or ventilators. Some programs have long waiting lists, while others have plenty of open spots.

Available Medicaid Waivers

The federal government maintains a list of waivers that are federal-state partnerships, including Home and Community Based Services Waivers and 1115 Demonstration Waivers. This list does not include TEFRA (Katie Beckett) waivers or state-based programs.

Complex Child Magazine has created a partner site, Kids’ Waivers, that contains a complete list of all types of waivers for children, including detailed information on eligibility, waiting lists, number of spots, and how to apply for programs.

Birth to 3 and Early Intervention Programs

Early Intervention programs are federally-mandated programs for children, ages birth to three, who have any type of developmental delay or at risk for having a developmental delay. Each state runs its own program, and each may have different eligibility criteria and services. Each state uses a different name for its program. You can find your state’s program on this list from the Early Childhood Technical Assistance Center.

Most children with feeding tubes will qualify for Early Intervention because they are unable to eat and drink or meet their nutritional needs. Children with feeding tubes typically qualify for feeding therapy. They may also qualify for physical, occupational or speech therapies. In some states, adaptive equipment, medical care, vision/hearing services, and transportation may also be provided. Most states provide services in the home setting, though some are facility-based.

In most states, a pediatrician recommendation is required to receive services. Services are typically offered for free regardless of insurance coverage or income, though some states require parent co-pays.

We recommend that any child who has a feeding tube be evaluated for Early Intervention services.