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Abstract

Although we do not have robust prevalence studies in the U.S., a recent meta-analysis estimated that 33.6% of individuals with intellectual and developmental disabilities (I/DD) have a mental health (MH) condition. We know that this prevalence may be an underrepresentation because of factors like diagnostic overshadowing. We also know that people with I/DD experience inequitable access to quality MH and preventive care. This highlights the chronic lack of and access to holistic, integrated care for individuals with I/DD, especially those who also have MH conditions. Consequently, an increasing number of individuals with I/DD experience MH crises and suffer adverse consequences. These consequences range from negative health outcomes and difficulties accessing community-based services, to prolonged boarding in hospital emergency departments, placement at psychiatric settings without proper accommodations for communication or disability-related needs, and engagement with law enforcement when behaviors are perceived as problematic for the public at large. These critical issues highlight the need for a comprehensive, national center that pulls together resources focusing on the dual diagnosis of I/DD and MH to support states and all their system partners, most importantly individuals with disabilities and their families. The need for a national resource center focused on increasing capacity and guided by principles of diversity, equity, and inclusion is significant. This paper outlines the establishment of The Link Center funded by the Administration for Community Living (ACL) and led by the collective experience and expertise of the following organizations with unparalleled I/DD-MH dual diagnosis leadership: the National Association of State Directors of Developmental Disabilities Services (NASDDDS); the National Association for the Dually Diagnosed (NADD), an Association for Persons with Intellectual Disabilities and Mental Health Conditions; and the National Association of State Mental Health Program Directors (NASMHPD). The Link Center is guided by three overarching goals to increase the capacity in the U.S. to support individuals equitably and more effectively with co-occurring cognitive, communication and MH conditions: (1) systems change, (2) direct service workforce and clinical capacity development, and (3) improved service access. The grant’s steering committee, comprised entirely of people with lived experience, serves as an essential rudder for The Link Center. Other efforts incorporated into the grant include shared learning groups, resource identification and development, and other efforts in collaboration with the Substance Abuse and Mental Health Services Administration (SAMHSA).

Plain Language Summary

We know that people with intellectual and developmental disabilities (I/DD) can also have a mental health (MH) condition. Yet, it is hard for people with I/DD to get good mental health care and supports that help them stay well. Because of this, a growing number of people with I/DD have MH crises and suffer bad results. This can mean people have poor health outcomes, that they do not get well, or get sicker. Other bad results might be staying in an emergency room or psychiatric hospital for a long time or getting involved with the police. These are very serious issues and show that there is a need for a national resource center that can help everyone do better for people who have both I/DD and a MH condition and their families.

This paper talks about The Link Center project and how it started. It is funded with a grant from the Administration for Community Living (ACL) and led by experts and leaders who know about I/DD-MH conditions. Three organizations are part of the grant. One is the National Association of State Directors of Developmental Disabilities Services (NASDDDS). Another is the National Association for the Dually Diagnosed (NADD), an Association for Persons with I/DD and MH Conditions. The third is the National Association of State Mental Health Program Directors (NASMHPD). The Link Center has several major goals to help people do a better job of supporting individuals with I/DD who also have MH needs. The first goal is to change the system of care. The second goal is to improve the skills of direct service workers and other professionals. The third goal is to make it easier to get services. There is a steering committee made up of people who have disabilities, and it serves as an important guide for The Link Center. Other activities include shared learning groups, finding published resources, and developing new resources. The Link Center also partners with the Substance Abuse and Mental Health Services Administration (SAMHSA).

Keywords: intellectual and developmental disabilities, mental health, resource, website, steering committee

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