A Gap the State Is Finally Addressing
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Finding behavioral health services for someone with an intellectual or developmental disability (IDD) in Washington has always been challenging. Providers who understand both mental health AND developmental disabilities are rare. Wait lists are long. Services often aren't designed for this population.
Now, DSHS is making this a priority. Their HCLA Strategic Goals specifically call out "improving behavioral health access for individuals with intellectual disabilities" as part of their client safety and rights protection strategy.
Here's what this means for families and providers.
The Dual Diagnosis Challenge
People with intellectual and developmental disabilities experience mental health conditions at rates 2-3x higher than the general population. Common co-occurring conditions include:
- Anxiety disorders - Often triggered by changes in routine, sensory overload, or communication challenges
- Depression - Can manifest as behavioral changes rather than expressed sadness
- PTSD - Higher rates of trauma exposure, especially among those who've been institutionalized
- Bipolar disorder - Mood episodes may present differently in individuals with IDD
- Psychotic disorders - More common than in the general population
Why It's Hard to Get Help
Diagnostic challenges:
- Symptoms present differently in individuals with IDD
- Communication barriers make assessment difficult
- Behaviors may be attributed to disability rather than treatable mental health conditions ("diagnostic overshadowing")
Provider limitations:
- Most mental health providers lack IDD training
- Most IDD providers lack mental health expertise
- Few specialize in both
System gaps:
- Mental health system says "they need DD services"
- DD system says "they need mental health services"
- Families are caught in the middle
What DSHS Is Prioritizing
The HCLA strategic goals don't detail specific programs, but the prioritization signals investment in:
Integration of Services
Rather than separate DD and mental health systems, the goal is likely:
- Behavioral health consultants embedded in DD services
- Training for DD providers on mental health recognition
- Training for mental health providers on IDD populations
- Care coordination that bridges both systems
Technology-Enabled Access
DSHS is also prioritizing "remote caregiving technology," which for behavioral health could mean:
- Telehealth appointments with IDD-specialized providers
- Remote behavioral consultation for caregivers
- Crisis support via video for de-escalation
- Broader geographic access to specialists
Safety Focus
This goal sits under "Client Safety & Rights Protection," suggesting emphasis on:
- Preventing behavioral crises that lead to harm
- Reducing inappropriate emergency room visits
- Decreasing reliance on restraint and seclusion
- Better outcomes through proactive support
Finding Behavioral Health Services for IDD in Washington
Developmental Disabilities Administration (DDA) Resources
If your loved one receives DDA services, start with their case manager. DDA can authorize:
- Positive Behavior Support (PBS) - Proactive strategies to address challenging behaviors
- Specialized Habilitation - Intensive 1:1 support including behavioral components
- Staff and Family Consultation - Professional guidance on behavioral approaches
Community Mental Health Centers
Some community mental health centers have developed IDD expertise:
- Ask specifically about IDD experience
- Inquire about adapted assessment approaches
- Request providers comfortable with supported communication
Specialized Programs
UW LEND Program: The Leadership Education in Neurodevelopmental Disabilities program at University of Washington trains providers and offers some clinical services.
Seattle Children's Autism Center: For individuals with autism, Seattle Children's provides specialized behavioral health services (primarily pediatric, but may have transition resources).
Community-Based Crisis Services: Look for mobile crisis teams that have IDD training. These can provide in-home support during behavioral emergencies.
Private Providers
When searching for private therapists or psychiatrists:
Questions to ask:
- "What experience do you have working with individuals with intellectual disabilities?"
- "How do you adapt your assessment approach for people with communication challenges?"
- "Are you comfortable working with my loved one's DD service providers as a team?"
- "What's your approach to behavioral challenges—medication, therapy, environmental modifications?"
Red flags:
- "I don't really do developmental disabilities"
- Unwillingness to communicate with other providers
- Only offering medication management without behavioral strategies
- Attributing all behaviors to disability without further assessment
For Home Care Providers
If you serve individuals with IDD who also have behavioral health needs, consider:
Training Investments
- Mental Health First Aid - Basic mental health awareness for all staff
- Positive Behavior Support - Proactive, person-centered approach to behaviors
- Crisis Prevention Institute (CPI) - De-escalation and safety techniques
- Trauma-Informed Care - Understanding how trauma affects behavior
Documentation Practices
Behavioral health providers need good data to help. Your documentation should capture:
- Antecedents: What happened before the behavior?
- Behavior: What exactly occurred? (Objective description)
- Consequences: What happened after? How did staff respond?
- Context: Time of day, location, who was present, any known triggers
This ABC data helps identify patterns and develop effective interventions.
Care Coordination
When clients have behavioral health providers, ensure:
- Regular communication about observations and progress
- Consistent implementation of recommended strategies
- Prompt reporting of significant behavioral changes
- Collaboration on crisis prevention plans
Know Your Limits
Some behavioral presentations require specialized support. Recognize when to:
- Request additional behavioral consultation
- Advocate for higher levels of service
- Refer to crisis services
- Adjust staffing ratios for safety
For Families
Advocacy Tips
Document everything:
- Keep a log of behavioral incidents
- Note what helps and what doesn't
- Track medication effects
- Record wait times and access barriers
Push for assessment: If providers attribute everything to disability, push back:
- "I understand they have a disability, but this behavior is new/different/worsening"
- "I'd like them assessed for anxiety/depression/trauma"
- "Can you refer us to someone with IDD mental health expertise?"
Request care coordination:
- Ask for a team meeting with all providers
- Ensure everyone has the same information
- Develop a unified behavioral support plan
Self-Care for Caregivers
Supporting someone with dual diagnosis is exhausting. Don't neglect:
- Your own mental health support
- Respite care (it's not optional—it's necessary)
- Connection with other families (peer support groups)
- Education about IDD mental health (knowledge reduces stress)
Resources
The Arc of Washington: The Arc provides advocacy support and can help navigate systems.
NAMI Washington: NAMI offers family support groups and education, though you may need to educate them about IDD specifics.
Parent to Parent: Washington State Parent to Parent connects families for peer support.
Looking Ahead
DSHS's prioritization of behavioral health access for IDD is a positive signal. It acknowledges:
- This population has been underserved
- The current system creates gaps and frustrations
- Improvement requires intentional focus and investment
The specific programs and timelines will emerge as the HCLA strategic goals are implemented. Families and providers should:
- Watch for new programs and pilots
- Provide feedback on what's working and what's not
- Advocate for continued investment
- Celebrate progress while pushing for more
The goal is a system where having an intellectual disability doesn't mean being shut out of mental health care. We're not there yet, but Washington is moving in the right direction.