Avoiding a Crisis

The reality is state waivers and services don't intentionally aim to keep adults with intellectual and developmental disabilities (IDD) living with their parents indefinitely leading to an emergency when parents become sick or pass away. Many systems are under-resourced, slow to respond, and not designed for long-term, proactive planning. That leaves families feeling like there's no other option.

Here’s why this happens:

1. Limited Housing Options

Most states have far fewer supported housing placements than the number of people who need them. Waitlists for residential services through Medicaid waivers can be years long, and some people only get placed during a crisis (e.g., death or illness of a caregiver).

2. Underfunded Services

Even when waivers are available, they are often underfunded or capped, making it difficult to provide enough staff, hours, or specialized support for independent living. Many families receive fewer support hours than needed to make living outside the family home viable.

3. Crisis-Based Systems

Many state systems are reactive instead of proactive. Services often kick in only after a crisis, like hospitalization, homelessness, or a caregiver emergency. There’s not always a clear path for planning and gradually transitioning into independence.

4. High Burden on Families

Because of service gaps, families become the default care system. State systems often assume that if a person lives at home and their needs are being met—even barely—they’re not in urgent need of services. This delays support until families can no longer provide care.

5. Lack of Flexible Models

Some states lack innovative or flexible residential models, like shared living, supported roommates, or self-directed services that empower adults with IDD to live independently. Traditional group homes may not fit everyone’s needs or preferences.

6. Transition Gaps After High School

When individuals “age out” of the school system (typically at 21), many services fall off. Families often struggle to navigate adult systems, and lack of transition planning leads to delayed or disrupted paths toward independence.

Planning to avoid a crisis is one of the biggest challenges families face due to limited resources, long waitlists, and system delays. But early and proactive planning can significantly improve the odds of securing appropriate housing before it becomes an emergency.

1. Get on Waiver Waitlists NOW

Even if your child doesn’t need services today, apply as early as possible.

Medicaid Home and Community-Based Services (HCBS) waivers are your key to funding for residential supports, staff, and services.
In many states, there are years-long waitlists, and most placements happen only after a crisis unless you’re already on the list.
Contact your state’s developmental disability (DD) agency or Medicaid office to find out which waivers support residential care and how to apply.

Tip: Keep documentation current. Update assessments, IEPs/transition plans, ISP's and medical info annually.

2. Connect with a Case Manager or Supports Coordinator

These professionals are your link to state services and can help:

Navigate the waiver system
Identify available community housing options
Plan and document your young adult’s needs and goals
Prepare for long-term support

If you don’t have one yet, click here to find a supports coordinator.

3. Begin Person-Centered Planning Early

This ensures the future plan is based on your young adult’s goals, preferences, and strengths.

Involve your young adult in the process—even if they use alternative communication or need support to express what they want.
Identify what kind of setting fits best: group home, shared apartment, supported living or lifesharing.
Explore trial options like short-term stays, day programs or part-time support in different settings.

Remember: Community living is a spectrum—independence looks different for everyone.

4. Build Independent Living Skills

Start teaching or reinforcing skills now, including:

Cooking, cleaning, personal hygiene
Using public transportation or ride services
Money management and banking basics
Self-advocacy and asking for help

Consider life skills programs, vocational rehab, or transition services through the school district (if under 22).

5. Explore Housing Models & Providers

Different models may include:

Group Homes: 24/7 support in small home settings.
Shared Living or Host Homes: Living with a caregiver in their home.
Supported Apartments: Independent living with drop-in support.
Co-housing or Intentional Communities: Some families create shared housing with others.

Tour facilities and interview providers before you're in crisis.

6. Create a Transition Timeline

Make a 1–5 year plan with milestones like:

Get on waitlists (Year 1)
Begin day or life skills programs (Year 1–2)
Trial weekend stays with support staff (Year 2)
Apply for group home placement (Year 3)
Move out target date (Year 4 or 5)

This reduces pressure and builds readiness gradually—for both your child and your family.

7. Prepare Legal & Financial Documents

Special Needs Trust or ABLE Account to protect benefits
Guardianship, conservatorship, or supported decision-making as appropriate
Ensure your child is receiving (or eligible for) SSI or Medicaid
Emergency plan that outlines who takes over if something happens to you

8. Advocate + Build Relationships with Providers

Strengthen your communication and advocacy skills to ensure your voice is understood and respected during important conversations. Check out Youtube videos with Chris Voss, Jefferson Fisher and Vanessa Van Edwards. If you study these people and apply it, I promise you that it will change your life and make a lot of progress advocating what you need.
Stay in regular contact with your service providers.
Get involved in parent networks, support groups, or advocacy organizations.
Get involved with local, state and federal legislators to share your struggles and collaborate with them/their staff to create real solutions that can help your loved one.
Let providers know you’re proactively planning and want to avoid emergency placement.

❗ Why This Matters

When families wait until a crisis (such as a parent getting sick or passing away), the individual with IDD is often:

Placed wherever a bed is open—regardless of fit or location
Moved abruptly, without transition or choice
Separated from known providers and communities
At higher risk for emotional stress, regression, or trauma

By planning early, you protect your child’s stability, dignity, and well-being.