Medicaid Waivers 101: What Families of Children with IDD/DD Need to Know

If you are raising a child with an intellectual or developmental disability (IDD/DD), you have probably heard the term Medicaid waiver at some point.

Medicaid waivers provide long-term support services for children with intellectual and developmental disabilities, helping families access care in the home and community rather than institutional settings. This guide explains what Medicaid waivers are, why they matter for families of children with IDD/DD, how waitlists work, and who to contact to get started. Maybe it came up at an IEP meeting, a doctor’s appointment, or in a late-night scroll through a parent Facebook group. It can sound confusing, overwhelming, and honestly, a little intimidating.

This post is meant to break it down in plain language. What Medicaid waivers are, why they matter so much for families, and what steps you can take today to get connected.

What Is a Medicaid Waiver?

At its core, a Medicaid waiver is a program that helps people with disabilities receive long-term supports and services in their home or community instead of in an institution.

Traditional Medicaid mostly covers medical care like doctor visits, hospital stays, and prescriptions. Medicaid waivers go a step further. They can help pay for things like:

• In home nursing or attendant care
• Personal care services
• Respite care for caregivers
• Therapies not fully covered by insurance
• Adaptive equipment
• Supported employment services
• Community based programs and skill building

The word “waiver” comes from the fact that the federal government allows states to waive certain Medicaid rules so they can offer these additional supports.

Why Medicaid Waivers Matter for Families?

For many families of children with IDD/DD, Medicaid waivers are not a luxury. They are often the difference between surviving and burning out.

Caring for a child with complex needs can mean:

• Reduced ability for parents to work full time
• High out of pocket medical and therapy costs
• Limited access to childcare or after school care
• Increased caregiver stress and exhaustion

Medicaid waivers are designed to help fill those gaps. They recognize that families are doing a lot of unpaid care every single day and that support matters.

Even if your child is young or you think “we are doing okay right now,” waivers are still important because most programs have long waitlists. In many states, families wait years or even a decade to receive services.

Getting on a waitlist early can be one of the most important advocacy steps you take for your child’s future.

Who Qualifies for a Medicaid Waiver?

Eligibility varies by state and by program, but most waivers consider:

• The individual’s disability or diagnosis
• Functional needs and level of support required
• Medicaid financial eligibility

Some waivers allow income limits to be based on the child’s income rather than the parents’, which can make a huge difference for middle-income families. This is another reason it is worth applying even if you assume you might not qualify.

Why Waitlists Are So Long?

One of the hardest realities of Medicaid waivers is that funding is limited. States can cap how many people they serve, which leads to long waitlists. This is frustrating and feels unfair, and it is also the current reality. The key thing families need to know is this:

You usually cannot move up the list unless you are already on it.

Waiting to apply because it feels overwhelming or because you do not need services right now can delay support later when needs increase.

How to Apply for Medicaid Waivers: Who to Contact?

Every state has an entity responsible for helping families apply for Medicaid waivers.

• In California, families often begin with their regional Regional Center for developmental services.
• In New York, support is coordinated through OPWDD (Office for People With Developmental Disabilities).
• In Florida, families may work with APD (Agency for Persons with Disabilities).
• In Pennsylvania, services are accessed through county Intellectual Disability/Autism (ID/A) offices.
• In Texas, families typically start with their local LIDDA (Local Intellectual and Developmental Disability Authority).

In other states, this entity may be called a DDS office, DD agency, Developmental Disabilities Services office, or something similar.

A simple Google search like:

“Medicaid waiver IDD services near me” or “developmental disability services [your state]” can usually point you in the right direction.

Another great resource for families is their local or state The Arc chapter. The Arc operates in every state and often provides education, advocacy, and guidance on IDD and DD services, including Medicaid waivers and waitlists. They can be especially helpful if you want help understanding your options before or after contacting a state agency.

When you call, you can ask:

• What Medicaid waiver programs are available for my child?
• How do I get my child placed on the interest list or waitlist?
• What documentation do I need to get started?

You do not need to have everything figured out before making that call. That is part of their job.

Common Myths About Medicaid Waivers

“My child is too young.”
Many families place their child on waiver waitlists in early childhood. Younger does not mean ineligible.

“We make too much money.”
Some waivers use special Medicaid eligibility rules that waive income requirements. It is still worth applying or asking.

“We don’t need help right now.”
Needs change over time. Being on a waitlist is about planning, not predicting failure.

Frequently Asked Questions About Medicaid Waivers

How long is the Medicaid waiver waitlist?
Waitlists vary by state and by waiver program. In many states, families wait several years before services become available. This is why getting on the waitlist as early as possible is so important.

Can my child be on a Medicaid waiver waitlist and still have private insurance?
Yes. Being on a Medicaid waiver waitlist does not cancel or replace private insurance. Many families use both once services are available.

Do Medicaid waivers transfer if we move to another state?
No. Medicaid waivers are state-specific. If you move, you will need to apply and join the waitlist in the new state.

What if my child’s needs change while we are waiting?
If your child’s support needs increase, contact your local IDD or DDS agency. In some cases, changes in need can affect priority status.

Do I need a diagnosis to apply for a Medicaid waiver?
Most likely Yes. It varies by program, but most programs require documentation of a disability or developmental delay. Your local agency can explain what documentation is needed.

Final Encouragement for Families

Navigating Medicaid waivers can feel like learning a new language while already exhausted. You are not doing anything wrong if this feels hard.

Think of applying for a waiver as an act of future care. For your child. For yourself. For your family.

If you take only one step after reading this, let it be this: reach out to your local IDD or DDS agency and ask how to get on the list.

If you want support walking through this process, you do not have to do it alone. CaringTide offers a Discovery Call for families who want Medicaid waiver help or IDD planning support, including understanding waitlists and next steps. Sometimes it just helps to talk it through with someone who knows the system and can help you map out a plan that fits your family.

You do not have to do everything today. You just have to start.