Feature Issue on Addiction and IDD

Spurred by Olmstead v. L.C. (1999) , a landmark U.S. Supreme Court decision affirming that people with disabilities have the right to receive services in their community rather than in an institution, California began engaging in community placement practices for people with intellectual and developmental disabilities (IDD) instead of relying on state developmental centers in the early 2000s. As the number of people admitted to state centers decreased, many of those who remained experienced significant health and behavioral needs, including mental health issues, substance use disorder, criminal justice involvement, or sexual maladaptive behaviors.

Regional centers, agencies charged with managing care for California residents with IDD, continued to work with the developmental centers to gradually reduce the number of people with disabilities living in institutions. State officials then issued grant proposal requests to provide for the needs of people with multiple diagnoses, such as IDD, mental illness, and/or substance use disorders.

In 2006, Heather Kinsey, a retired associate professor at California State University, Sacramento and Carl Hsu, a physician, proposed the development of a program that would meet the needs of people with significant health and behavioral needs who had a dual diagnosis. The proposal focused on providing treatment to individuals who were transitioning out of a state institution or were at risk of being admitted to one due to their complex needs. They proposed creating the Milieu Center, a place designed specifically to serve individuals who were involved with the justice system, people who were at risk of incarceration, and people who were recently released from jail or prison. The grant proposal centered on establishing that all the individuals who would attend the center would be treated with dignity and respect. Inclusion and empowerment of individuals with disabilities would be one of the center’s most valued philosophies. Kinsey and Hsu were awarded one of the grants offered by the California Department of Developmental Services via Alta California Regional Center (ACRC) to establish the Milieu Center. I served as the director, and we recruited Jenn Errol, Carrie Karademos, and Alejandra Gallardo to assist in the development and implementation of the program due to their extensive work within the forensics and mental health fields.

The Milieu Center opened its doors in December 2007 as a day treatment program for adults ages 18-59 who are dually diagnosed with a mental illness and intellectual disability, with many of the clients also having a substance use disorder. Currently approved to serve 45 individuals, the center functions on the belief that all persons, regardless of their abilities or disabilities, can benefit from an environment that meets and supports their individual social, emotional, cognitive, physical, developmental, and healthcare needs. The center focuses on bridging the siloed care that clients typically are required to navigate by providing a holistic, person-centered approach to care.

The program is designed for people who are dually diagnosed with IDD and a mental health concern. They may also have secondary concerns, including self-injury, property destruction, physical and/or verbal aggression, anxiety/panic disorders, substance use issues including substance use disorders, and inappropriate sexual behaviors. Clients may also exhibit low self-esteem, poor coping skills, and issues with daily living skills.

The Milieu Center serves adults who are transitioning from a state developmental center (SDC) or a forensic institution (jail or prison) into the community through the ACRC community placement plan. The center also serves people at risk of involuntary admission into an SDC or being placed in a jail or prison. Often, these adults have been unsuccessful in other programs or placements. Through transition planning and rehearsal and meeting with care providers, Milieu staff work closely with ACRC and forensic institutions to make the transition successful.

The goal of the program is to assist residents in reaching and maintaining their highest level of functioning and independence, while treating them with dignity and respect. This goal is accomplished through assessment, development of individual program/therapy goals and measurable objectives, and use of positive reinforcement. Positive behavioral methods are used in teaching new skills and adjusting problematic behaviors. Opportunities for recreational therapy, community integration, vocational training, adult education, life skills, music therapy, nursing groups, individual and group therapy, anger management, sexual boundaries education, and chemical dependency education are given to all residents.

The center promotes the principles of “normalization” and “least restrictive environment” by teaching the skills and abilities needed to successfully reside in the community and work in an area of personal choice. Inclusion and empowerment of individuals with disabilities are critical organizational values, providing an environment where clients can build life-long skills in a setting that least infringes on their freedom and enhances the potential for their growth. Daily routines provide opportunities for making choices and establishing connections in the community.

Philosophy and values

The therapeutic milieu is an environment that is structured and maintained as an ideal setting to work with clients. It includes safe physical surroundings, which minimizes stress and provides a chance for rest and nurturing. It provides a time to focus on the development of strength and an opportunity to learn to identify alternatives or solutions to problems. This setting also allows clients to take part in a community in which they can share feelings and experiences and enjoy social interaction and growth as well as therapy. The Milieu Center is a safe place, a non-punitive atmosphere in which caring is a given factor. Clients are expected to assume personal responsibility and expect feedback from other clients and employees. A key factor in a therapeutic milieu approach is the establishment of trust. Trust is the foundation of a therapeutic environment, and consistency and limit setting are the building blocks. Just as a physically healthy body may be better able to withstand stress, a person with adequate or high self-esteem may be better able to deal with emotional difficulties. Staff working to build self-esteem do so by establishing trust relationships. They set and maintain limits, accept the client as a person, have realistic expectations, and provide a non-judgmental structure that promotes client success. They assign responsibilities and activities at first that can be easily accomplished, then advance to more difficult tasks. They offer praise for successes, minimize negative feedback, and use confrontation judiciously and in a supportive manner. All of this encourages residents to make their own decisions.

Several fundamental beliefs guided our approach to treatment. First, we recognize that each client is accountable for their own feelings, actions, beliefs, and life circumstances, regardless of their limitations or need for assistance. Second, we approach each client as a whole person, considering their unique background, environment, and inherent strengths. Third, we view residents not as passive recipients of care, but as active partners in the process of setting and achieving goals.

Our experience shows that the people we support choose healthier lifestyles and adopt appropriate coping mechanisms when we provide feedback and present alternative strategies for meeting needs. Recognizing the interconnectedness of physical and emotional health, we prioritize both aspects in our treatment approach, understanding that improvements in physical health often lead to enhanced emotional well-being.

To facilitate comprehensive care, our team employs a multidisciplinary approach. Caregivers, independent life skills and supported living support workers, service coordinators, family members, and other healthcare providers all participate in treatment plans to ensure a collaborative and holistic approach.

Centering goals

To help people reach their optimum levels of functioning, the center begins by conducting individual assessments, followed by crafting personalized individual service plans (ISPs). Daily group and individual sessions address specific goals. Activities and learning experiences promote independence and positive decision-making skills. Addressing treatment needs and resolving problem areas is a collaborative effort involving a professional multidisciplinary team, with sessions designed to meet assessed needs. Our trained professionals teach self-control methods, anger management techniques, and recovery skills. Ensuring safety in the community is paramount, and we teach appropriate community behavior and safety skills through individual and group sessions, reinforced by community outings. We work with other community programs, offering opportunities for clients to visit and transition into these programs with our recommendations. Involving the entire team is essential for the success of this approach and for true community inclusion.

Intersection of SUD and IDD

Unfortunately, there is a significant lack of accessible SUD treatment tailored for this population. SUD treatment practices often lack an evidence basis, and historically, healthcare options for people with disabilities have been poor. This results in a critical shortage of evidence-based practices and skilled providers for the IDD population. Further complicating this matter is that people with IDD have been shown to have higher rates of psychopathology than the general population, leading to complex comorbidities where dual diagnoses of SUD and mental illness are common.

The absence of appropriate health care options and services for people with IDD, and insufficient training for healthcare providers is particularly problematic in the field of SUD treatment. Often the first option for a dually diagnosed person is a referral to general SUD services, such as Alcoholics Anonymous, Narcotics Anonymous, or county services. Yet, the literature is consistent that workers who screen for SUD, conduct brief interventions, and perform other related services often lack the knowledge or the skillset to provide appropriate and comprehensive care to people with IDD. A lack of knowledge and skills leads to the absence of adaptation, which in turn creates an environment where the care provided is subpar, thus increasing the health complexities of this population. Lacking tailored treatment options, people with IDD often struggle to engage in treatment of any kind and when they do, it is usually complicated and problematic. Plain-language materials are typically not available, and staff lack training in working with people with disabilities.

Future Directions

The research concerning best practices for clinically managing people with IDD with SUD is limited, so identifying solutions to the gaps in services begins with examining current epidemiology. Developing, testing, validating, and implementing evidence-based treatment tools, such as IDD-informed screening materials, assessment tools, treatment curricula, and/or interventions is needed.

Another challenge has been the federal requirement under the Home and Community-Based Services Final Rule to provide services in the most integrated settings possible. The people we support are in structured environments for fewer hours per week, so we have to collaborate even more with their care homes, mental health providers, and service coordinators. When this wrap-around care works, it typically increases their chance of success.

People with IDD and SUD experience substantive disparities and inequalities across the healthcare continuum, including in specialized addiction treatment. Prioritizing the development and appropriate funding of person-centered programs like the Milieu Center is an important step in addressing the gaps in treatment, but the addiction and disability fields must advocate for large-scale collaboration that will bridge services for more people. We must also advocate for policies to address systemic disparities in access to treatment for people with disabilities. The cost of failure is mounting.