How to Navigate Behavioral Challenges With Compassion in Adults With IDD

To navigate behavioral challenges with compassion, treat behavior as communication, prepare before hard moments with predictable routines and calming skills, stay calm and validate feelings during them, and reconnect afterward to solve the problem together. If anyone is in immediate danger, call 911. For emotional crisis support, call or text 988.

This guide is for adults with intellectual and developmental disabilities (IDD) or traumatic brain injury (TBI) and the people who support them, including family members, direct support professionals, and case managers. The adult’s own voice and goals lead every step.

Why Do Behavioral Challenges Happen in Adults With IDD?

Behavioral challenges in adults with IDD are often a form of communication. A behavior can signal an unmet need, such as pain, sensory overload, anxiety, frustration or a change in routine. That does not make every behavior safe or acceptable, and it does not place blame. It changes the first question to “What is this telling us?”

Clinicians may call these challenging behaviors or behaviors of concern. Whatever the label, the goal is the same: understand the reason, meet the need and teach a skill that works better.

Rule out a medical cause first. A sudden change in behavior can also signal pain, illness, a medication side effect or poor sleep. Ask the person’s doctor to check before assuming the behavior is only emotional.

Positive behavior support builds on this idea. The team works out why a behavior happens, then changes the environment, teaches new skills and responds the same way every time. The person’s own goals and preferences guide the plan. The Association for Positive Behavior Support describes the approach as person-centered and humane, with individuals and families helping set the goals. The Boggs Center at Rutgers offers a short introduction.

If a behavior keeps happening or ever causes injury, ask the team to request a behavior assessment and a written behavior support plan from a qualified professional. Your case manager can help coordinate that request.

A Before, During and After Plan for Challenging Behaviors

A simple three-phase plan helps everyone respond the same way each time. Before a hard moment, build a foundation with predictable routines and coping skills. During it, stay calm, validate the feeling and keep everyone safe. After it, reconnect, solve the problem together and share what you learned with the team.

Before: Build a Foundation

Preparation is the most powerful tool you have. Create a supportive environment while things are calm.

• Keep routines predictable, and give a heads-up before changes.
• Practice coping skills, such as slow breathing, a short walk or time in a quiet space, when no one is upset.
• Notice and praise what is going well throughout the day. Connection and trust make hard moments easier to get through.
• Note patterns: where and when a behavior happens and what came right before it. A simple log helps clinicians find the trigger.
• Write a crisis plan with the person that lists warning signs, what helps, what to avoid and who to call.

During: Stay Calm and Connected

Your first job is to steady yourself. Pause and take a breath. Your calm presence is an anchor that can keep a situation from escalating.

• Listen and validate without judgment: “I can see you are very frustrated right now.”
• Use few, simple, kind words and a steady tone. State limits clearly.
• Offer space, a choice or a calming option the person picked in advance.
• Remove hazards and keep everyone safe. Do not argue, lecture or bargain in the moment.
• If anyone is in immediate danger, call 911.

After: Reconnect and Grow

Once emotions settle, reconnect first. This is a time for problem-solving, not punishment. Ask, “What helps you when you feel this way?” and listen to the answer. Write down what happened and share it with the whole support system, including the person’s doctor, therapist, case manager and direct support professionals, so everyone responds in the same way.

How Can You Avoid Caregiver Burnout?

Avoid caregiver burnout by planning breaks before you reach your limit, sharing the load with trusted people and keeping your own health appointments. Supporting someone through hard moments is demanding, and compassion fatigue is real. Caring for your own health is not a luxury. It is what lets you give steady support over time.

• Plan breaks before you reach your limit. NC Medicaid describes respite as scheduled breaks for caregivers, including overnight, weekends or emergency care. Learn about respite care at CCMS or read how to find respite care near you.
• Share the load. Name two or three trusted people who can step in, and add them to the crisis plan.
• Keep your own medical and counseling appointments.
• A case manager supports the whole team, including you. Tell them when the load feels too heavy.
• If you feel overwhelmed, call or text 988 at any time.

For more, see our IDD and TBI caregiver resources for North Carolina.

Where Can You Get Help With Behavioral Challenges in North Carolina?

In North Carolina, help with behavioral challenges can come from a case manager, specialized consultations, respite, Community Living and Support, and NC START, a statewide crisis prevention and intervention program. Access depends on Medicaid eligibility, enrollment and the person’s plan, so ask a care coordinator or case manager which supports fit.

NC START serves people age six and older with a documented IDD or TBI diagnosis before age 22 and a co-occurring mental health diagnosis or complex behavioral needs. CCMS provides several of these supports across North Carolina, so ask which are available in your county. For funding details, see our guides to NC Medicaid 1915(i) services and the NC Innovations Waiver. NC Medicaid describes each Innovations Waiver service on its NC Innovations Waiver services page.

When to Get Help Right Away

Immediate danger: call 911. Tell the dispatcher the person has IDD and what helps them stay calm.

• Emotional crisis: call or text 988 at any time. The 988 Lifeline is free, confidential and open 24 hours a day, and it is for people supporting someone as well.
• Your crisis line: find your county in the NC DHHS LME/MCO Directory, then save your LME/MCO’s crisis number in your phone and your crisis plan.
• Sudden change in behavior: call the person’s doctor.

How Can Covenant Support You?

CCMS case managers help individuals and families coordinate these services, connect with Medicaid-funded supports and build person-centered plans that the person helps write. Through Covenant Thrive, individuals enrolled in the NC Innovations Waiver can receive behavioral support when it is documented in the plan. Browse our services, or call (704) 780-4552 or contact our team.

Frequently Asked Questions About Behavioral Challenges in Adults With IDD

How do I respond to challenging behavior in an adult with a developmental disability?

Stay calm, keep everyone safe and validate the feeling in a few simple words. Afterward, reconnect and solve the problem together without punishment. Over time, look for the unmet need behind the behavior, such as pain, sensory overload, anxiety or a change in routine, and build predictable routines and coping skills that address it.

What is positive behavior support?

Positive behavior support is an approach that looks for the reason behind a behavior, then changes the environment, teaches new skills and rewards the behavior you want to see. It relies on respect and the person’s own goals, not punishment. A qualified professional can build a written behavior support plan with the whole team.

Why would an adult with IDD show a sudden change in behavior?

A sudden change often signals an unmet need, such as pain, illness, a medication side effect, poor sleep, a change in routine or sensory overload. Ask the person’s doctor to rule out a medical cause, then share what changed with the case manager and clinicians.

What should I do during a behavioral crisis?

Pause and take a breath, keep everyone safe, speak calmly in short sentences, validate the feeling and give space. Do not argue or lecture. If anyone is in immediate danger, call 911. For emotional crisis support, call or text 988.

How can I avoid caregiver burnout?

Plan breaks before you reach your limit. Ask about respite, share the load with other trusted people, keep your own health appointments and talk with the case manager early if the situation feels unsafe or unsustainable. You can call or text 988 anytime you need to talk with someone.

What is NC START and who can use it?

NC START is a statewide community crisis prevention and intervention program for people with IDD who also have mental health or complex behavioral needs. It offers clinical consultation, training, therapeutic respite and crisis response. Eligibility includes age six or older and a documented IDD or TBI diagnosis before age 22. Anyone who knows the person can refer, with consent.

What Medicaid services help with behavioral challenges in North Carolina?

Depending on eligibility and the person’s plan, case management, specialized consultations, Community Living and Support, respite and crisis services can all help. NC Medicaid describes specialized consultations as advice and training from an expert in topics like supporting positive behaviors. Ask your LME/MCO care coordinator which services fit the person-centered plan.

How do I get help from Covenant Case Management Services?

Call (704) 780-4552 or contact our team through our website. A case manager can review the person’s plan, explain which services may be available in your county, connect you with behavioral supports and help the whole support team work from the same plan.

Related Guides

• How to find respite care near me
• How to get a case manager with Medicaid
• How to care for adults with disabilities
• How to qualify for respite care
• The Independence Toolkit
• NC Medicaid 1915(i) services: a family guide
• NC Innovations Waiver: a family guide

Download the Supported Living Guide

A stable, supportive home makes hard moments easier to manage. For a deeper look at building an environment that supports independence and peace of mind, download our Supported Living Guide.

Sources and Further Reading

• NC START (NCDHHS): statewide crisis prevention and intervention for people with IDD and mental health or complex behavioral needs
• NC Medicaid Innovations Waiver services: descriptions of each service, including respite, specialized consultations and crisis services
• 988 Suicide and Crisis Lifeline: free, confidential support by call, text or chat, 24 hours a day
• NC DHHS LME/MCO Directory: find the LME/MCO and crisis line for your county
• What is Positive Behavior Support?: an introduction from the Boggs Center on Developmental Disabilities at Rutgers
• Association for Positive Behavior Support: a membership organization for people who use positive behavior support

About Covenant Case Management Services

Covenant Case Management Services (CCMS) is a CARF-accredited provider of case management and supports for individuals with intellectual and developmental disabilities (IDD) and traumatic brain injury (TBI) across 56 North Carolina counties. We help individuals and families build supports that fit the person’s goals.

Ready to talk? Call (704) 780-4552 or contact our team.