The 1999 US Supreme Court decision in Olmstead v. L.C. (527 U.S. 581) was a pivotal point in defining treatment access for people living with an intellectual or developmental disability (IDD). The decision held that the Americans with Disabilities Act of 1990 (ADA) required that individuals with mental (intellectual or developmental) disabilities have the right to live in the community rather than being institutionalized as a matter of course. In turn, community placement ultimately requires the provision of a continuum of treatment and support services to reduce and/or avoid institutionalization in psychiatric hospitals and developmental centers. Ensuring access and equitable care specific to the needs of the IDD population was a major implication of Olmstead.
Although the ADA was passed some 25 years ago and Olmstead delivered 16 years ago, States and Managed Care Organizations (MCOs) continue to struggle with implementing subsequent requirements of the law and court decisions. States and MCOs in violation of this mandate have found themselves in litigation over their lack of compliance with the ADA, and are required to show a plan of action to guarantee changes in policy, as well as the provision for a continuum of treatment and support services in community based settings. Additionally, there’s another dimension in the care of this population that ties into the Mental Health and Addiction Equity Act (MHPAEA) of 2008. National and international research has demonstrated elevated substance addiction risk and prevalence rates for persons with IDD.
Prior to Olmstead, individuals with IDD had limited to no access to addictive substances or socialization venues that promote risky behavior. With increased freedom, personalization of living conditions and socialization that Olmstead now protects, persons with IDD must learn to navigate the myriad social challenges that the general population regularly addresses. However, the cognitive vulnerability, limited experience, and social limitations of persons with IDD make them particularly at risk for addiction and involvement in risky behavior, as well as entanglements with the criminal justice system. Risks include similar rates of tobacco smoking and alcohol use as the general population and a higher risk of addiction despite low exposure to substances such as marijuana, cocaine and heroin. Complicating things further for persons with IDD, service barriers are particularly high and their rate of retention in treatment for substance use disorders continues to fall below that of the general population. Of importance is the range of functional abilities and differences in risk prevalence; those with a higher functioning range show a higher risk for risky behavior and substance addiction due to increased socialization and employment opportunities. Also, individuals with IDD are subject to increased social vulnerabilities in relationships and are at elevated risk for varying forms of physical, sexual and emotional abuse, and social coercion. Trauma informed treatment is particularly important to implement as are well-developed screenings to determine both an individual’s needs and abilities, since there is also a prevalence of other, co-occurring psychiatric disorders for persons diagnosed with IDD and addiction.
Treatment access and applicability tailored to meet the needs of this population are essential, because evidence-based practices (EBPs) for the general population are not well documented for IDD and addiction services. Whether addressing smoking cessation or alcohol misuse, the recognized standard EBPs for addiction do not apply. Neither group processing, cognitive re-structuring, nor motivational interviewing evidence strong effects or retention in treatment care for persons with IDD and addiction. Alternatively, EBPs for IDD such as, Applied Behavioral Analysis (ABA) have been shown to decrease an individual’s ability to disengage effectively from risky behavior and put them at a higher vulnerability to please and acquiesce to social pressure.
For all of these reasons, there is an urgent need for treatment integration for persons with IDD and addiction. To learn more about these issues, check with ADA, MHPAEA, and changes in the DSM for the diagnosis of IDD, substance addiction, and trauma. Investigate how your State serves the IDD community with a Medicaid waiver program and strategize how your system of care can meet this need, particularly within a model of integrated care and parity compliance.