Are We Planning for the Services Our Loved One May Need, Not Just the Services They Receive Today?

When you’re raising a child with a disability, it’s easy for disability planning to focus on what is happening right now. The therapies, supports, medical appointments, benefits, and services that help your family get through each day.

But what about the services your loved one may need five, ten, or twenty years from now?

One of the most important parts of disability planning is looking beyond today’s needs and understanding how to prepare for the supports that may become essential in the future.

And here’s something many families don’t realize: Being eligible for a program, being on a waiting list, and actually receiving services are three very different things.

Understanding that distinction can make a meaningful difference in your family’s long-term planning.

Understanding the Difference Between Eligibility, Waiting Lists, and Services

Many families assume that once their loved one qualifies for a program, the services will be available when they’re needed. Unfortunately, that isn’t always the case.

Depending on the program and state, the process may involve several separate steps:

Eligibility: Your loved one meets the program’s criteria, which may include disability-related needs, financial requirements, or other qualifications.

Enrollment or registration: Your family has completed the necessary application or registration process. In some programs, this may mean being added to an interest list or waiting list rather than receiving services.

Access to services: Funding, available providers, program capacity, and other requirements determine when services can actually begin.

For families pursuing Medicaid Home and Community-Based Services (HCBS) waivers, this distinction is particularly important. Some waiver programs have limited enrollment and lengthy waiting lists. A person may meet eligibility criteria but wait years before receiving waiver services. This means that planning for future services often needs to begin long before those services are immediately necessary.

Medicaid Waiver Waiting Lists: Why Staying Connected Matters

If your family is on a Medicaid waiver interest list or waiting list, maintaining that connection is an important part of disability planning.

Even if your loved one is doing well with current supports, circumstances can change. A caregiver may become ill, family finances may shift, or your loved one’s support needs may increase.

Here are a few things worth reviewing:

Keep contact information current. Make sure the responsible agency has your correct mailing address, phone number, and email. If your family moves or changes contact information, find out how to update it officially.

Respond to outreach and notices. Some programs require families to respond to periodic letters, calls, or requests to confirm continued interest. Missing a notice may have serious consequences, including removal from a waiting list.

Understand your status. Ask whether your loved one is on an interest list, has completed an eligibility determination, or is actively enrolled in a waiver. These terms can mean different things.

Ask about prioritization. Many states use priority or scoring systems to determine which individuals on a waiting list may receive services sooner. These systems vary by state and program and may consider factors such as the person’s support needs, current living situation, risk of losing existing supports, or caregiver circumstances.

Update changes in caregiver health or circumstances. If a primary caregiver experiences a significant change in health, ability to provide care, or availability, notify the appropriate agency. In some states and programs, changes in caregiver circumstances may affect a family’s priority score or urgency for services. You do not have to wait until a crisis occurs to ask whether a change is relevant.

Keep records. Maintain copies of applications, confirmation letters, correspondence, and updates. Knowing when you applied and having documentation of your status can be helpful when questions arise.

An important reminder: Don’t assume that a change automatically increases your priority. Ask your state agency how its assessment and prioritization process works, what changes should be reported, and how to document them.

Medicaid, Waivers, and Service Availability Are Not the Same

Another common source of confusion is assuming that Medicaid coverage automatically provides access to every disability-related service.

Medicaid is a health coverage program, but HCBS waiver programs can provide additional services designed to support individuals in their homes and communities. These may include respite, personal assistance, residential supports, employment services, and other services, depending on the specific waiver. However, each program has its own eligibility requirements, service limits, and enrollment processes.

A person may:

• Qualify for Medicaid but not meet the eligibility requirements for a particular waiver.
• Meet waiver eligibility criteria but remain on a waiting list.
• Receive Medicaid services but need additional supports that Medicaid does not cover.
• Be eligible for a particular service but have difficulty finding an available provider.

Understanding these distinctions can help families identify potential gaps and explore alternative resources while waiting.

Documenting Changing Support Needs

One of the most valuable things families can do is maintain documentation of their loved one’s support needs over time.

This doesn’t have to be complicated. Consider keeping a record of:

• Assistance needed with daily living activities, such as bathing, dressing, eating, and personal care
• Supervision and safety needs
• Communication and behavioral support needs
• Medical needs and care coordination
• Transportation and community access
• Changes in abilities, independence, and support requirements
• Changes in caregiver health, availability, or ability to provide support

Why does this matter?

Eligibility for certain programs and services may depend on documented functional needs, not solely on a diagnosis. When the time comes to apply for services or complete an assessment, having a clear picture of your loved one’s needs can help families communicate more effectively and provide relevant information.

Documentation can also help communicate needs during periods of reassessment or when a family is working with multiple agencies or providers.

Where Do You Start? Finding Your State’s Disability Services Agency

If you’re wondering how to get your loved one on a waiting list for services, or how to update an existing application, you may be asking: Who do I actually call?

For individuals with intellectual and developmental disabilities (IDD), the best starting point is typically your state’s developmental disabilities agency. Depending on where you live, this agency may be part of your state’s Department of Health and Human Services, Department of Human Services, or another state government department.

This agency can help you identify:

• Which Medicaid HCBS waiver programs are available in your state
• How to apply or be added to an interest list or waiting list
• How to check the status of an existing application
• How to update contact information or report changes in support needs
• Whether changes in caregiver health or circumstances may affect prioritization
• Which local or regional agency serves your family

How to Find Your State’s Agency

To locate your state’s intellectual and developmental disabilities agency, you can visit the National Association of State Directors of Developmental Disabilities Services (NASDDDS) directory at https://www.nasddds.org/state-agencies/.

You can also search online using your state’s name along with:

• “Developmental Disabilities Services”
• “Medicaid HCBS Waiver”
• “Developmental Disabilities Waiver Waiting List”

If your loved one already has a case manager, support coordinator, or service coordinator, that person may also be able to help you identify the appropriate agency and next steps.

Five Questions to Ask as You Plan Ahead

As you approach the end of the year, consider setting aside time to revisit your disability plan and ask:

1. Are we on the interest lists or waiting lists for programs our loved one may need in the future?
2. Do we understand the difference between being eligible, enrolled, and actually receiving services?
3. Are our contact information and program records up to date?
4. Have there been changes in our loved one’s needs or our family’s caregiving circumstances that we should report?
5. Are we documenting changes in support needs and caregiver circumstances that may be relevant to future services?

You don’t have to know every answer today. Sometimes, simply knowing which questions to ask is the first step toward a more informed plan.

Planning Is About Creating Options

Disability planning isn’t about predicting exactly what the future will look like. It’s about understanding the systems, exploring possibilities, and creating options for your loved one and your family.

The services someone needs today may look very different from the services they need in the future. Starting conversations early, staying connected to programs, and understanding eligibility and enrollment processes can help families feel better prepared for those changes.

At CaringTide, we believe disability planning is an ongoing process, not a one-time task. Each step you take today can help lay the groundwork for greater stability, support, and opportunity in the future.

And remember: You don’t have to figure it all out at once. Start with one question, one phone call, or one small step. It all counts.