May 28, 2021
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  National Leaders in the Mental Health Aspects
of Intellectual and Developmental Disabilities
Friday Feature
Awareness + Action = Social Change

What is the role of Mental Health Awareness in the outcomes we want to see, in actual social change? Do public awareness campaigns help to address the real issues people with IDD face in accessing mental health care?
In order to affect social change, we must first promote and achieve awareness of the importance of mental health and destigmatize treatment. The second step is to take action to transform that awareness to real social change.
Social change can be defined as the way in which human interactions, relationships, behavior patterns, and cultural norms change over time. These changes ultimately transform cultural and social institutions, concepts, and rules, which will inevitably impact society for the long-haul. (Source)
The START Network’s actions help to bring about social change. Our everyday efforts are impacting attitudes and thinking, relationships, behavior patterns, and in time, cultural norms with the goal of transforming larger cultural and social institutions. By implementing START’s values and approaches, you are making an impact. 
Did you know?1...
  • People with IDD are at an increased risk for mental illness 2,3,4
  • Approximately 40% of people with IDD experience a mental health condition, nearly 2x the national average. 2,3,4
  • Autism has even higher rates (up to 70%) 5
  • High levels of need + gaps in service = high levels of emergency psychiatric department use 6,7,8

The Center for START Services, in partnership with START programs & Network partners across the country (see the national map here), are dedicated to building capacity, fostering trauma-informed, culturally competent systems of care, and engaging in research and evaluation aimed at improving the quality of care
Here are just a few of our START Network partners to explore:

1. These facts were adapted from a recent article published on the START model-
Kalb, L. G., Beasley, J. B., Caoili, A., McLaren, J. L., & Barnhill, J. (2021). Predictors of Mental Health Crises Among Individuals With Intellectual and Developmental Disabilities Enrolled in the START Program. Psychiatric Services72(3), 273-280.

2. Borthwick-Duffy SA: Epidemiology and prevalence of psychopathology in people with mental retardation. J Consult Clin Psychol 1994; 62:17–27

3. Emerson E: Prevalence of psychiatric disorders in children and adolescents with and without intellectual disability. J Intellect Disabil Res 2003; 47:51–58

4. Cooper SA, Smiley E, Morrison J, et al: Mental ill-health in adults with intellectual disabilities: prevalence and associated factors. Br J Psychiatry 2007; 190:27–35

5. Simonoff E, Pickles A, Charman T, et al: Psychiatric disorders in children with autism spectrum disorders: prevalence, comorbidity, and associated factors in a population-derived sample. J Am Acad Child Adolesc Psychiatry 2008; 47:921–929
6. Weiss JA, Wingsiong A, Lunsky Y: Defining crisis in families of individuals with autism spectrum disorders. Autism 2014; 18:985–995

7. Lunsky Y, Lin E, Balogh R, et al: Emergency department visits and use of outpatient physician services by adults with developmental disability and psychiatric disorder. Can J Psychiatry 2012; 57:601–607

8. Lunsky Y, Paquette-Smith M, Weiss JA, et al: Predictors of emergency service use in adolescents and adults with autism spectrum disorder living with family. Emerg Med J 2015;32:787–792
Legislative Update
Legislative Update for CSS Network Partners

While the United States legislature continues to work through the pending infrastructure legislation, there is a flurry of activity surrounding the recently passed American Rescue Plan, signed by President Biden in March. Contained within this legislation are potential opportunities for states and service providers to add, increase, and enhance services to people with disabilities, including those with IDD-MH needs, through a variety of mechanisms. One of the opportunities contained in the legislation is the ability for states to receive a 10% increase in federal medical assistance percentage (FMAP) for certain Medicaid HCBS Services. 
Key elements of this opportunity include:
  • Temporary 10% increase to federal Medicaid funding for HCBS and behavioral health services
  • States must use the increased FMAP to supplement, not supplant, existing state funds expended for Medicaid HCBS in effect as of April 1, 2021
  • States must use state funds equivalent to the new federal funds to implement one or more activities to enhance, expand, or strengthen HCBS under Medicaid
  • CMS released guidance on May 13, 2021
Things we are watching and will continue to update:
  • The American Jobs Plan: Infrastructure Bill
This currently debated legislation includes a variety of infrastructure elements designed to rebuild portions of America. This includes roads, bridges, and transportation structures like airports. It also includes investments into technology, jobs, the electricity grid and the public water systems. There are significant portions of the bill designed to address education, job creation and training, and research and development activities. Along with these vital investments, the bill also includes funding for healthcare related investments related to expanded access to HCBS, extension of Money Follows the Person programs and an increase in wages and benefits for HCBS caregivers.
Have a healthy and happy weekend,

The Center for START Services

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Institute on Disability at the University of New Hampshire