Rare U: Education and Awareness for our Kleefstra Community

For Rare Disease Month and leading up to Rare Disease Day, we wanted to share information about topics that are often discussed within the Kleefstra community and share information.  First up:

The Katie Beckett Waiver (also known as the TEFRA Waiver in some states) is a Medicaid eligibility pathway that allows children with significant disabilities or medical needs to qualify for Medicaid coverage regardless of their parents’ income. This waiver is a lifeline for many families in the Kleefstra syndrome and broader special needs communities, as it provides access to critical therapies, medical equipment, and in-home care that might otherwise be unaffordable.

What Does the Katie Beckett Waiver Cover?

While specific benefits vary by state, the waiver typically covers:

• Therapies (speech, occupational, physical therapy, etc.)
• In-home nursing or personal care services
• Medical equipment (wheelchairs, communication devices, etc.)
• Respite care for families
• Behavioral health services

How Do You Get the Katie Beckett Waiver?

Each state administers the program differently, but in general, the process involves:

1. Confirming Eligibility – The child must meet the state’s definition of having a disability or medical complexity that would qualify them for institutional care, but they are living at home.
2. Applying Through Medicaid – Families typically apply through their state’s Medicaid office or waiver program. The application often includes:
   • Medical records
   • Physician evaluations
   • Proof of disability and care needs
3. Functional and Financial Assessments – The state assesses whether the child meets the criteria for institutional-level care without considering parental income.
4. Approval & Enrollment – If approved, the child receives Medicaid benefits, which can be used alongside private insurance to cover services.

What Is the Impact of the Katie Beckett Waiver?

• Reduces financial burden – Covers essential therapies and medical expenses that insurance may not fully fund.
• Allows children to receive care at home – Keeps families together rather than requiring institutional care.
• Improves quality of life – Ensures access to critical interventions that enhance mobility, communication, and independence.
• Supports caregivers – Provides respite care and in-home assistance, reducing burnout for parents and guardians.

Challenges & Considerations

• Waitlists: Some states have long waitlists for waiver slots.
• Renewal requirements: Families must reapply periodically, proving continued eligibility.
• State variations: The availability and benefits differ widely by state, so it’s essential to check local Medicaid policies.

For families navigating the Kleefstra syndrome journey, the Katie Beckett Waiver can make a huge difference in accessing necessary supports. Parents often share that this waiver allows them to focus on their child’s growth and well-being rather than worrying about insurmountable healthcare costs.

It’s important to note that the availability and specifics of the Katie Beckett Waiver can differ significantly from state to state. Kelly Rhyne advises that “many states do not advertise that the resources are available, so it is important to research the resources that are available for you and your family.”  She suggests that it could be helpful to discover and connect with other families as both a resource and a support!  Sign up and discover families in your area through the Kleefstra Syndrome Worldwide Map.

Some states may have waiting lists or additional eligibility criteria. Therefore, it’s crucial to consult your state’s Medicaid office or visit their official website for the most accurate and up-to-date information.  For a comprehensive overview of Medicaid waivers and programs for children with disabilities in various states, you can visit Kids’ Waivers.