Meeting the Mental Health Needs of Individuals with Intellectual and Developmental Disabilities

People with intellectual and developmental disabilities (IDD) face unique challenges throughout their lives and may have a combination of complex needs, including mental health challenges. When health and community services are coordinated in a seamless continuum, people can more easily live, work, and participate fully in their communities.

Mental health conditions are diagnosed at higher rates for people with IDD than the general population, so access to appropriate mental health care is a prevalent concern. Approximately 36 percent of individuals with IDD receive a mental health diagnosis, compared to approximately 20 percent of the general population.1 Moreover, studies have shown that mental health conditions for individuals with IDD are often more severe.2 People with IDD may also be dealing with substance use disorders, but lack of research and evidence-based treatment for this population results in lower ability to receive or remain in treatment.3

People with IDD are also estimated to experience trauma, including physical abuse, neglect, or sexual abuse, at 2.5 to 10 times the rate of the general population.4 Those traumatic experiences are often associated with depression, anxiety, post-traumatic stress, and other symptoms. Children with IDD in particular are at higher risk of physical restraint and seclusion tactics, physical abuse, neglect, and sexual abuse.5 The National Child Traumatic Stress Network estimates that most of these incidents against children with IDD remain unreported.6

There are a number of contributing factors that impact the availability and accessibility of mental health care for people with IDD. Service delivery is particularly fragmented for this population, as services may come from the mental health agencies or the IDD agencies, but rarely both.7 Additionally, services for people with IDD often focus on behavior management rather than mental health treatment and support. The first line of “treatment” is often limited to psychopharmacology. Psychotropic drugs are frequently used to control and manage behaviors, which may address the symptoms but not the illness.8 This approach significantly reduces opportunities for individuals with IDD and ignores the underlying mental health concern. Access to evidence-based treatment and recovery support services is crucial for achieving recovery.

Other barriers include lack of formal provider training, diagnostic overshadowing (attributing behaviors to the disability and not assessing for mental health conditions), unwillingness of providers to serve people with IDD, difficulty in facilitating communication between consumers and providers, and navigating complex systems.9,10,11

Current Landscape

The Statewide Behavioral Health Strategic Plan identified “Behavioral Health Services for Individuals with Intellectual Disabilities” as a major gap (Gap 9) in our current mental health system of supports and services.12 The inclusion of Gap 9 in the strategic plan offers future opportunities for increasing access to quality mental health services for both children and adults with IDD. The plan was first developed for fiscal years 2017-2021 following the 84th legislative session in 2015. The September 2022 updated version again identified “Behavioral Health Services for Individuals with Intellectual Disabilities” as a gap to be considered for FY 2022-2026 in Texas.13

While some efforts are underway to address this gap, in 2019, HHSC’s exceptional item request #22 for maintaining and expanding the IDD Crisis Continuum of Care was significantly underfunded.14 This funding request HHSC proposed prior to the 86th Legislative Session offered an opportunity for increasing mental health services for individuals with IDD. The limited funds appropriated were used to develop a learning collaborative pilot referred to as the Outpatient Biopsychosocial Approach for IDD services (OBI) pilot.15 Currently, the pilot operates at five Local Mental Health Authority (LMHA)/Local Intellectual and Development Disability Authority (LIDDA) sites:

  • Bluebonnet Trails Community Services
  • Integral Care
  • Lakes Regional Community Center
  • MHMR Tarrant
  • Harris Center for Mental Health and IDD16

In January 2022, Texas Health and Human Services (HHS) released the Texas Statewide Intellectual and Developmental Disabilities Strategic Plan as developed by the IDD Strategic Planning Group.17 Within this report, community-based behavioral health services and workforce shortage were identified as two of the major gaps in services for children and adults with IDD.18

Policy Solutions

Much more can be done to improve mental health treatment and services as well as increase opportunities for recovery for individuals with IDD, including:

  • Implementing the state mental health plan’s recommendations for the treatment and support needs of individuals with IDD;
  • Devoting adequate financial resources to treatment, services, and supports;
  • Creating a paradigm shift to move from “controlling and managing behaviors” to a culture of supporting the mental health recovery of individuals with IDD;
  • Creating trauma-informed IDD systems of care;
  • Removing systemic barriers in the public mental health system that prevent individuals from receiving both IDD and mental health services;
  • Prioritizing efforts to build awareness and foster education for providers, families, and individuals; and
  • Building the workforce capacity of mental health providers willing to provide services to individuals with IDD, including IDD peer support.

References

  1. Providers Alliance for Community Services in Texas. (2017). What is IDD? https://www.pacstx.org/wp-content/uploads/2017/12/What-is-IDD.pdf  ↩︎
  2. Aggarwal, R., Guanci, N. & Appareddy, V.L. (2013). Issues in treating patients with intellectual disabilities. Psychiatric Times, 30 (8). https://link.gale.com/apps/doc/A339254464/AONE?u=txshracd2598&sid=googleScholar&xid=30419048  ↩︎
  3. Carroll Chapman, S. L., & Wu, L. T. (2012). Substance abuse among individuals with intellectual disabilities. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3328139/  ↩︎
  4. National Association of Councils on Developmental Disabilities. (2017). Councils on Developmental Disabilities addressing sexual violence and neglect . https://nacdd.org/wp-content/uploads/2017/11/DD-Councils-Special-Publication.pdf ↩︎
  5. National Child Traumatic Stress Network. (n.d.). Intellectual and Developmental Disabilities. https://www.nctsn.org/what-is-child-trauma/populations-at-risk/intellectual-and-developmental-disabilities  ↩︎
  6. National Child Traumatic Stress Network. (2004). Facts on traumatic stress and children with developmental disabilities. https://www.nctsn.org/resources/facts-traumatic-stress-and-children-developmental-disabilities  ↩︎
  7. Fletcher, R., & Behn, K. (2017). Collaboration for people with MI/IDD: System failure and promising practices. The National Association for the Dually Diagnosed (NADD).  http://thenadd.org/news/collaboration-for-people-with-miidd-system-failures-and-promising-practices/.  ↩︎
  8. Charlot, L. & Beasley, J. (2013). Intellectual disabilities and mental health: United States-based research. Journal of Mental Health Research in Intellectual Disabilities, 6(2). https://doi.org/10.1080/19315864.2012.715724  ↩︎
  9. Krahn, G.L., Hammon, L., & Turner, A. (2006). A cascade of disparities: Health and health care access for people with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 12(1), 70–82. https://doi.org/10.1002/mrdd.20098 ↩︎
  10. Ervin, D. A., Hennen, B., Merrick, J., & Morad, M. (2014). Healthcare for persons with intellectual and developmental disability in the community. Frontiers in Public Health, 2, 83. https://doi.org/10.3389/fpubh.2014.00083 ↩︎
  11. Ibid. ↩︎
  12. Texas Health and Human Services. (2019). Statewide behavioral health strategic plan. https://www.hhs.texas.gov/sites/default/files/documents/laws-regulations/reports-presentations/2019/hb1-statewide-bh-strategic-progress-report-fy19.pdf  ↩︎
  13. Texas Health and Human Services. (2022). Statewide behavioral health strategic plan. https://www.hhs.texas.gov/sites/default/files/documents/hb1-statewide-behavioral-health-idd-plan.pdf  ↩︎
  14. Texas Health and Human Services. (2019). Legislative appropriations request for Fiscal Years 2020-2021. https://www.hhs.texas.gov/sites/default/files/documents/about-hhs/budget-planning/lar/hhsc-legislative-appropriations-request-2020-2021.pdf  ↩︎
  15. Texas Health and Human Services. (2021).  Intellectual and developmental disability and behavioral health services: Fiscal Year 2021 in review. https://www.hhs.texas.gov/sites/default/files/documents/ddi-bhs-annual-report-fy-2021.pdf  ↩︎
  16. Ibid. ↩︎
  17. Texas Health and Human Services. (2022). Texas statewide intellectual and developmental disabilities strategic plan. https://www.hhs.texas.gov/sites/default/files/documents/statewide-idd-strategic-plan-jan-13-2022.pdf  ↩︎
  18. Ibid. ↩︎

Updated on December 12th, 2024



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