Understanding How to Support People with Developmental Disabilities

March, known as National Developmental Disabilities Awareness Month, is an opportunity to celebrate the inclusion of people with disabilities in all aspects of community life while also acknowledging the barriers they still face. 

The rate of mental health conditions for those with intellectual or developmental disabilities (IDD) is estimated to be two to three times higher than for the general population. Up to 35% of people with IDD also have co-occurring conditions such as anxiety, depression, major neurocognitive challenges, and motor stereotypies. 

To better serve people with developmental disabilities, it’s important to recognize and address their unique needs to ensure they receive equitable and effective care. In this post, we’ll share a list of best practices for mental health professionals who work with this population. 

What are developmental disabilities? 

According to the Eunice Kennedy Shriver National Institute of Child Health and Human Development, intellectual and developmental disabilities are defined as differences that are usually present at birth and that uniquely affect the trajectory of the individual’s physical, intellectual, and/or emotional development. Many of these conditions affect multiple body parts or systems. 

A few examples of developmental disabilities include autism, cerebral palsy, down syndrome, dyslexia, Tourette syndrome, hearing loss, learning challenges, vision impairment, and ADHD. 

People living with developmental disabilities can face various challenges, such as issues with mobility, communication, independent living, and physical and mental health. Moreover, people with IDD experience trauma, including abuse and neglect, at higher rates than those without IDD. 

As the Texas Health and Human Services puts it, “People with IDD are often defined by their behavior. Recognizing that their behavior is a form of communication and not a symptom of disability is crucial to understanding and meeting their needs.” 

Advocacy efforts with Jordan Smelley 

Jordan Smelley is a Mental Health Peer Specialist in Texas and a person in long-term recovery from intellectual and developmental differences with co-occurring mental health challenges. His work involves educating the community about supporting persons with IDD and advocating for policies and practices that promote accessibility and inclusiveness.

Jordan is also the 2023 recipient of the American Association of Intellectual and Developmental Disabilities Texas Chapter Empowerment Award for Excellence in Promotion of Self-Advocacy. 

He let us know that while policy progress is often slow, he appreciates the small wins. Recently, Texas House Bill 3286 was passed, which is significant for people with IDD because it makes accessing new medications much easier. 

On his site, you’ll find educational content, presentation recordings, and worksheets such as this one on Using Self-Awareness to Advocate for Support Needs in Different Environments

5 best practices for supporting people with developmental disabilities 

1) Practice a person-centered approach  

Person-centered care means healthcare providers work collaboratively with other professionals and the person receiving their services to do what’s best for the person’s health and well-being. This could involve working closely with Peer Professionals, educators, occupational therapists, speech-language pathologists, or other specialists.  
The approach is also focused on involving individuals in their care— amplifying and prioritizing the person's own goals, treatment preferences, values, and needs. Collaborative care opens the door to holistic assessment and intervention, ensuring that the individual's developmental and mental health needs are addressed comprehensively. 

2) Be mindful of unintentional implicit bias

In the United States, people with disabilities receive substandard preventive care and have overall poorer health statuses compared to those without a disability, partly due to negative implicit attitudes from healthcare providers. You can work on reducing implicit bias by continuing to learn about the needs of people with IDD, listening to their feedback, and simply approaching your relationships with patience. 

3) Apply evidence-based practices  

Tailor your care to each individual's unique needs, sensory preferences, and communication abilities. You can incorporate evidence-based practices such as visual supports, augmentative and alternative communication (AAC) devices, simplified language, structured routines, and shorter sessions. 

4) Provide trauma-informed care  

Given that many people with IDD have experienced trauma in some capacity, we recommend using a trauma-informed approach that emphasizes safety, trust, collaboration, and empowerment. If you don’t recognize the impact of trauma on children and adults with IDD, it can exacerbate past trauma or cause new trauma that compromises their ability to succeed. 

5) Address dual diagnosis and co-occurring conditions

Screen for co-occurring mental health or substance use challenges and other conditions to make sure you’re creating an effective treatment plan. It’s also worth considering biological, psychological, and environmental factors that might be influencing the individual's well-being.  
Jordan Smelley pointed out that once people with IDD are diagnosed as having co-occurring mental health issues, it helps them gain more access to Peer Support services. 

6) Promote social inclusion and community integration

Advocate for inclusive practices within community settings to promote social engagement and belonging. You can also encourage people to get involved in community-based activities, networking groups, and recreational programs to foster meaningful relationships and enhance their quality of life. 

Want to learn more about developmental disabilities? 

We’ve collected a few resources you can use to continue learning and share with other folks in your network. Be sure to subscribe to the South Southwest MHTTC newsletter for news on upcoming events or trainings related to IDD. 

Related MHTTC resources

Addressing Recovery Support Needs of Persons with IDD Training

Access the Recording of this Training Here The purpose of this presentation is to help Mental Health and Substance Use providers as well as the Recovery Community at large better understand the potential support needs of people with IDD with or without co-occurring Mental Health and/or Substance Use Challenges that they interact with either socially, academically, and/or professionally by providing examples of potential support needs and methods that can be used to help address support needs.  Learning Objectives:  By the end of the presentation attendees will be able to:  Define Intellectual and Developmental Disabilities  Identify different potential support needs of people with Intellectual and Developmental Disabilities including vital support needs around Sensory Processing Disorders like Tactile Dysfunction and Proprioceptive Dysfunction  Execute a more trauma informed and person-centered approach to interacting with persons with Proprioceptive Dysfunction and/or Tactile Dysfunction About the Presenter:  Jordan Smelley is a Mental Health Peer Support Specialist in Texas and a person in long-term recovery from Intellectual and Developmental Differences with Co-occurring Mental Health challenges. Jordan partly defines his own recovery in relation to the opportunities available to present and educate the community on topics around supporting persons with IDD.  Jordan was awarded the American Association on Intellectual and Developmental Disabilities Texas Chapter’s Empowerment Award for Excellence in Promotion of Self-Advocacy at its 47th Annual Convention on November 16, 2023, in recognition of Jordan’s Self-Advocacy efforts around expanding supports available to persons with Intellectual and/or Developmental Differences.

Screening and Assessing for Trauma with Children That Have Intellectual or Developmental Disabilities

Children with an intellectual or developmental disability (IDD) are more likely to experience traumatic events and it is important to understand the impact of trauma of these children. This 1-hour webinar will define and explore trauma-informed care with children with IDD and ways to screen these children for trauma in primary care settings. Objectives: Define intellectual and developmental disabilities (IDD) Discuss how traumatic experiences may affect children with IDD Discuss trauma-informed care with children with IDD Determine ways to screen and assess for trauma with children with IDD Presented by: Allison “Alli” Morton, PhD Allison “Alli” Morton, PhD, LMHP, PLP, is a postdoctoral fellow in the Department of Psychology at the Munroe-Meyer Institute for Genetics and Rehabilitation at the University of Nebraska Medical Center. She recently earned her PhD in Clinical Psychology from Texas Tech University and completed her predoctoral internship at the University of Arkansas for Medical Sciences. Dr. Morton provides clinical services in an integrated behavioral health clinic at Children’s Physicians Creighton. Her clinical and research interests center around the implementation and dissemination of evidence-based practices with children and adolescents, particularly in relation to trauma. Dr. Morton also has an active interest in promoting resilience following traumatic events and fostering use of positive parenting practices in primary care and outpatient settings. Learn more about the series: Implementing Trauma-Informed Practices in Pediatric Integrated Primary Care  

Trauma and Trauma-Responsive Strategies for Professionals Supporting Individuals with Intellectual and Developmental Disabilities and Their Families

To view the slide deck that was used during this event, please click DOWNLOAD above Recording coming soon! This was an all-day event on July 27th, 2022 that went from 9:00 a.m.- 4:00 p.m. MT/10:00 a.m.- 5:00 p.m. CT.  Event Description This all-day workshop offers a trauma-informed lens that can help parents and caregivers or providers respond to the emotional needs of children, youth, and adults in their care, and foster meaningful relationships that contribute to resilience for trauma-impacted individuals. The workshop will build strategies for well-being and emotion-focused communications skills for those caring for individuals with intellectual and developmental disabilities across a variety of settings.    The following topics will be covered during this workshop:    Trauma (what is it, prevalence, impact)  Signs of post-traumatic stress or other trauma-related reactions that might signal a need for intervention    Evidence-based mental health supports that can help families and individuals with I/DD dealing with post-traumatic stress (what are they, questions to ask when seeking services or making referrals).    Resilience (what is it, how can we cultivate it); Emphasis on the protective power of safe, stable, and nurturing relationships.    Overview of specific strategies for caregivers/adults who care for individuals with I/DD to build: Skills for self-care, emotional self-awareness, and regulation(parents/caregivers/providers) Skills for understanding and responding to child/youth/adult emotional needs:  Communicating about challenging topics (e.g. trauma, stressful events or family transition)  Addressing behavioral challenges  This training was limited to 30 participants. Trainer Marcela Torres Pauletic, Ph.D.   Dr. Marcela Torres Pauletic is a clinical psychologist and Senior Research Associate from the Institute of Behavioral Science, Prevention Science Program, Center for Resilience and Wellbeing at CU Boulder. She has expertise in child social-emotional development, childhood trauma and resilience, and the protective role of relationships throughout the lifespan. Dr. Torres Pauletic regularly provides training and consultation to mental health professionals in evidence-based treatments for families experiencing trauma, and to educators, parents, and other children- and family-serving professionals in relationship-based strategies for building resilience.  

Supporting the Mental Health of Students with Intellectual and Developmental Disabilities Part 1

 Supporting the Mental Health of Students with Intellectual and Developmental Disabilities  Part 1 of this two-part series defines intellectual and developmental disabilities (IDDs) and describes signs of mental health challenges in students with IDDs.  Download the presentation slides here Learning Objectives By the end of the webinar, participants will be able to:  Identify students with intellectual and developmental disabilities (IDDs). Identify mental health challenges in students with IDDs at school. Describe risk factors for students with IDDs to develop mental health conditions.       About the Speaker  Katherine Pickard, Ph.D., received her doctorate in clinical psychology from Michigan State University and completed a two-year postdoctoral fellowship at JFK Partners at the University of Colorado School of Medicine. Her primary research interest is in the translation of evidence-based practices into community systems that are naturally positioned to serve children with autism spectrum disorders (ASD) and developmental delays. Dr. Pickard's research is grounded in community-engaged research models and guided by dissemination and implementation science. Dr. Pickard leads and collaborates on research examining mechanisms that foster the adoption, implementation and sustainment of evidence-based practices within a variety of community systems, including early intervention and public school systems. She is particularly interested in the role of families and community stakeholders in shaping interventions as they are implemented within the community, and in other factors that impact the reach and sustainability of translation efforts. Clinically, Dr. Pickard is a licensed psychologist and has a strong background in supporting individuals with ASD and other developmental disabilities across the lifespan. She holds specific expertise in parent-mediated interventions rooted in naturalistic, developmental and behavioral principles (know as NDBIs) as well as cognitive behavioral therapy (CBT) for youth with ASD and co-occuring anxiety. 
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