“Our Parents Are Gone—Now What?” Navigating Life After a Parent for Adults with Developmental Disabilities

For many adults with developmental disabilities, parents are more than just family—they are caregivers, advocates, and the foundation of daily life. But what happens when they’re gone?

For siblings, extended family, and close friends stepping into a caregiving role, this transition can feel overwhelming. Questions about housing, daily support, medical care, and long-term planning can arise all at once. Unfortunately, many families find themselves navigating this process during a crisis, without clear guidance on where to turn.

If you are in this situation—or know someone who is—you are not alone. There are resources and support systems available to help.

The Biggest Challenges Families Face

When a parent who has been the primary caregiver passes away or becomes unable to provide care, their adult child may suddenly face:

🔹 Uncertainty about where to live – Can they stay in the family home? If not, what are the options?

🔹 Loss of daily support – Who will assist with personal care, transportation, and decision-making?

🔹 Changes in services and benefits – How do they maintain Medicaid services and other supports?

🔹 The emotional impact of losing their strongest advocate – Who will step in to help navigate the system?

These challenges can feel overwhelming, especially when combined with the grief and stress of losing a loved one.

The good news is that there are systems in place to help individuals maintain stability and independence—but knowing how to access them is key. 

Understanding the Supports for Community Living (SCL) Waiver

One of the most important resources available in Kentucky is the Supports for Community Living (SCL) waiver. This program provides services that help adults with intellectual and developmental disabilities live as independently as possible.

Some of the key services available through the SCL waiver include:

✅ Help with daily living tasks (bathing, dressing, meal preparation)
✅ Caregiver support and personal assistance
✅ Residential options and housing support
✅ Day programs and job training

For individuals whose parents have passed away or can no longer provide care, the SCL waiver’s emergency criteria may allow them to qualify for immediate services—ensuring they don’t lose access to the care and stability they need.

Where to Start: Next Steps for Families

If you are stepping in to support a loved one after a parent’s passing, here are some first steps to consider:

📌 Confirm Medicaid Eligibility & Services – If they are not already receiving Medicaid waiver services, applying as soon as possible is crucial. The SCL waiver can help provide essential care.

📌 Assess Housing & Support Needs – Will they need in-home support, a caregiver, or a new living arrangement?

📌 Connect with a Case Manager or Advocate – Navigating these systems can be complex. Working with an expert who understands self-direction and Medicaid waivers can make the process much easier.

📌 Have Conversations About Their Wishes – If they are able to express their preferences, involving them in decisions about their future is important.

Every family’s situation is unique, and there is no “one-size-fits-all” solution—but the key is to start early, ask for help, and take it one step at a time.

You Don’t Have to Navigate This Alone

If you’re trying to figure out what comes next for a loved one with a developmental disability, you don’t have to do it alone. I specialize in helping families navigate this transition—making sure your loved one gets the care, stability, and support they need.

💬 Schedule a free consultation today to get personalized guidance and next steps. Click here to connect with me.

Let’s take the next step—together.