The Link Center: Bringing Equitable Access to Quality Health and Mental Health Supports
Photo Credit: Rick Guidotti for Positive Exposure
By Stacy L. Nonnemacher, Ph.D
“Persons with disabilities die earlier, have poorer health, and experience more limitations in everyday functioning than others.” World Health Organization
Health inequities for people with disabilities are a call to action for resources, tools, and information for supporters and systemic change. This need starts with an understanding of these adverse conditions and experiences of people with disabilities. The Global Report on Health Equity for Persons with Disabilities outlines that the following compound these health inequities:
Structural factors: Ableism, stigma, and discrimination that inform laws and policies that may deny them rights afforded to those without a disability.
Social determinants of health: Poverty and other poor living conditions and exclusion from education and employment add to the risk of poor health and unmet health care needs.
Risk factors: Non-communicable diseases, smoking, poor diet, alcohol consumption and a lack of physical activity that lead to poorer health outcomes.
Health system: Health care worker’s lack of knowledge, biases, and discriminatory practices that lead to inaccessible or lack of health care and information.
The Centers for Disease Control and Prevention’s (CDC) Disability and Health Data Systems further highlight that people with disabilities have experienced poorer health when compared to those without disabilities:
The data also show that 40.9% of people with disabilities report fair or poor self-rated health compared to 9.1% of people without a disability. Not only are people with disabilities experiencing poorer health than those without a disability, but when asked about their general health, they also are reporting that they believe their general health is not good at a higher rate than people without disabilities.
This health inequity and poor outcomes were intensified during the COVID-19 pandemic. COVID-19 disproportionately impacted people with disabilities directly or indirectly affecting their health and well-being. Not only were people with intellectual and developmental disabilities (I/DD) at a higher risk of dying from COVID-19 than those without disabilities, but they were also unable to access necessary services and supports adversely impacting their lives. People with disabilities may rely on home and community-based services (HCBS) to work, live, and play in their communities. Due to many reasons including keeping one another safe, supporters were not providing critical support to people and their families/caregivers including transportation, employment, habilitation, and community engagement. Further, people with disabilities experienced barriers to accessing routine and preventative health care despite the growth of telehealth which provided opportunities for many. Unfortunately, not everyone has benefited from telehealth especially if technology was not available or accessible for the person.
There is a need to support states who are implementing HCBS waivers to find ways to address these inequities and lack of appropriate services. The National Association of State Directors of Developmental Disabilities Services (NASDDDS), the National Association for the Dually Diagnosed (NADD), and the National Association of State Mental Health Program Directors (NASMHPD) have collective experience in creating, educating, communicating, and training state and federal policymakers, families, providers, and individuals with I/DD and mental health conditions, creating a collaboration to address the capacity and system needs.
Funded by Administration for Community Living (ACL), The Link Center has three overarching goals to increase capacity in the nation to equitably support individuals with co-occurring I/DD and mental health support needs:
Systems Change
Improve policies, service design, and service coordination.
DSW & Clinical Capacity
Build a diverse workforce to support individuals with ID/DO and mental health needs.
Service Access
Improve access to person-centered, culturally and linguistically appropriate mental health services and community supports.
Additional partnerships (see above), a Steering Committee made up of people with lived experience guiding the work, and engagement of other expert contributors through opportunities like learning collaboratives will only help to strengthen health care equity by building on the three pillars of the 2022 global report on health equity for persons with disabilities:
Integrating health services with an emphasis on primary care and essential public health functions;
Multisectoral policy and action; and
Empowering people and communities.
This work and these collaborations are essential to identify scalable best practices, strategies, model policies and protocols for state systems, clinicians, and supporters. Additionally, the Center’s key focus is curating training curricula to support workforce competencies in trauma-informed supports for people with I/DD and co-occurring mental health , along with toolkits and resources for meaningful engagement and adaptive approaches to treatment aimed at a wide array of audiences. Specifically, The Link Center is placing a keen eye on overall health and wellness emphasizing resources and information specific to supports and strategies to encourage healthy emotional, physical, and mental well-being, including better ways to engage with medical systems to ensure that people are getting their needs met. As the Center’s efforts progress, we hope to increase health access and capacity to better support people with I/DD and mental health conditions—to ultimately move the needle related to the health inequity of this population.
Footnotes
1 “Health Inequities Lead to Early Death in Many Persons with Disabilities." World Health Organization. World Health Organization, December 2, 2022. https://www.who.int/news/item/02-12-2022-health-inequities-lead-to-early-death-in-many-persons-with-disabilities.
2 Global report on health equity for persons with disabilities. Geneva: World Health Organization; 2022. Licence: CC BY-NC-SA 3.0 IGO.
3 "Disability and Health Data System (DHDS)." Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, December 2, 2022. https://www.cdc.gov/ncbddd/disabilityandhealth/dhds/index.html.
4 "Disability, Health Equity & COVID-19." The National Institute for Health Care Management (NIHCM) Foundation. The National Institute for Health Care Management (NIHCM) Foundation, October 14, 2021. https://nihcm.org/publications/disability-health-equity.
Bibliography:
"Disability and Health Data System (DHDS)." Centers for Disease Control and Prevention.
Centers for Disease Control and Prevention, December 2, 2022. https://www.cdc.gov/ncbddd/disabilityandhealth/dhds/index.html.
"Disability, Health Equity & COVID-19." The National Institute for Health Care Management
(NIHCM) Foundation. The National Institute for Health Care Management (NIHCM) Foundation, October 14, 2021. https://nihcm.org/publications/disability-health-equity.
Global report on health equity for persons with disabilities. Geneva: World Health Organization;
2022. Licence: CC BY-NC-SA 3.0 IGO.
“Health Inequities Lead to Early Death in Many Persons with Disabilities." World Health
Organization. World Health Organization, December 2, 2022. https://www.who.int/news/item/02-12-2022-health-inequities-lead-to-early-death-in-many-persons-with-disabilities.
Stacy L. Nonnemacher, PhD
About the Author
Stacy L. Nonnemacher, Ph.D. is the Director of Cross-System Strategies for the National Association for State Directors of Developmental Disabilities Services where she is responsible for leading efforts to support states in developing positive support models for people with complex support needs. Dr. Nonnemacher most recently served as the Clinical Director for Pennsylvania’s Office of Developmental Programs influencing and informing policy and programmatic decisions related to state Medicaid programs.
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