CLINICAL QUALITY OF CARE – PRACTICE PARAMETERS  Office of the Chief Medical Officer  Clinical Operations  Co-Occurring Intellectual/Developmental Disabilities  ClinP-18   Category: Clinical Programs Published Date: December 2023

PARAMETER GOAL To provide staff guidance on treatment standards for providing mental health interventions for individuals with co-occurring intellectual/developmental disabilities (I/DD). Individuals with developmental disabilities: Have a high rate of co-occurring mental health issues. May require specialty mental health services. According to the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition, Prevalence of mental disorders in people with intellectual disabilities is three to four times higher than individuals in the general population. Many individuals with co-occurring autism spectrum disorder (ASD) will meet the diagnostic criteria for psychiatric disorders. 70% of youth with ASD meet criteria for at least one psychiatric disorder. 40 % meet criteria for two or more disorders Mental health services for individuals with co-occurring I/DD can effectively: Treat mental health conditions. Contribute to developing healthy personal goals. TERMINOLOGY Autism Spectrum Disorder (ASD): A pervasive neurodevelopmental disorder characterized by impairments in social communication and restricted, repetitive patterns of behavior, interests and/or activities. Cerebral Palsy: An umbrella term that refers to a group of motor disorders affecting a person’s ability to move resulting from damage to the developing brain either during pregnancy or shortly after birth. It can affect body movement, muscle control, muscle coordination, muscle tone, reflex, posture, and balance. Those with cerebral palsy also may have visual, learning, hearing, speech, intellectual impairments, epilepsy, as well as significant emotional disturbance. Developmental Disabilities: A term that covers a variety of conditions that affect areas of physical, learning, language, or behavior. These conditions begin before adulthood and require lifelong support. To achieve this outcome, mental health services should be sufficiently funded to appropriately assess and treat individuals. Epilepsy: A central nervous system disorder (neurological disorder) in which nerve cell activity in the brain becomes disrupted, causing seizures or periods of unusual behavior, and/or sensations and variable loss of consciousness. Intellectual/Developmental Disability (I/DD): (formerly referred to as “Mental Retardation”) Impairments of general mental abilities that impact adaptive functioning in the cognitive, social, and practical domains. Diagnostic Overshadowing: In mental health when psychiatric problems in persons with I/DD are attributed to the symptoms of I/DD, rather than to expressions of psychopathology, especially with the presentation of new problem behavior. MEASURES The presence of a developmental disability should never be the sole exclusion criterion for treatment of a co-occurring mental disorder that meets “medical necessity” criteria for treatment in specialty mental health systems. The presence of behavioral disruptions or mood dysregulation should be attributed solely to the presence of a developmental disability only after thorough assessment has ruled out the presence of other potentially contributory mental health disorders such as depression or anxiety or other mental health disorders.  ASSESSMENT Request and review available records from: Regional Centers Other health agencies Family or caregivers Prior mental health treatment and Other systems that provide services Address any relevant issues that are contained in the records. Give special attention to standardized tests of intelligence and adaptive functioning. Assess the criteria for specialty mental health services. The “primary diagnosis” for the specialty mental health program is the mental health diagnosis that those services are designed to address, or from which they remove treatment barriers. Assess the individual strengths and areas of functioning.  Identify challenges, barriers, and needs associated with achieving identified clinical goals. Consider diagnostic overshadowing. Assess the abilities of family members and caregivers to meet needs. Assess for the presence of stressors related to care giving.   TREATMENT STRATEGIES Include mental health resources and treatments which: Address and improve functioning. Address challenges to accessing mental health services. Include strategies for overcoming those challenges. Address accessing the full array of community services and resources which promote optimal functioning.  Clinical staff should know how to effectively access Regional Center services, as well as services from health and educational providers.  Mental health treatment delivery should promote effective collaboration and coordination with other systems providing services. Address any self-injurious, destructive, aggressive, and/or disruptive behaviors. Psychotropic medication should be prescribed judiciously and not be used solely for long-term behavioral control. Close monitoring of individuals for potential adverse effects should be carefully documented, including those that stem from the pathophysiology of the co-occurring developmental disability. The use of polypharmacy should be avoided when possible. If the developmental disability is secondary to an underlying medical condition that requires medication, psychotropic medications only should be prescribed after the client’s underlying physiological condition(s) are assessed and addressed to determine if potential drug interactions or adverse effects are related to those conditions. Family members, caregivers, and significant others should be included in the individual’s treatment if the client so desires. Consideration should be given to these individual’s’ ability to support and participate in implementing the treatment plan. General health issues associated with a developmental disability should be addressed in collaboration with other healthcare providers and caregivers (if indicated). These health issues include, but are not limited to:  Smoking Poor diet and digestion issues (i.e. constipation) Insufficient exercise  Sexually transmitted diseases Vulnerability to trauma and abuse  Injuries that are traumatic  Address and monitor for the presence of the forms of trauma and/or exploitation to which individuals with a developmental disability can be vulnerable. Assessment should include direct discussion with both the client and caregivers if such trauma and/or exploitation is suspected. Clinicians should be aware of how an individual with I/DD may respond based on desire to please at the expense of accurate facts. PROVISION OF SERVICES Services should be provided by a multi-disciplinary treatment team that include: medical, educational, behavioral, clinical, and occupational professionals, and other providers who all have input and contributions to the plan of care. All members of the team should work under a shared PERMA informed model that fosters Positive Emotion, Engagement, Relationships, Meaning and Accomplishment across all aspects of intervention and services. OUTCOMES AND MONITORING Teams should include the individual and family members or other supports in defining what is a positive outcome for them as well as preparing for potential crises and challenges as they arise. Everyone on the team including the client will know when the goals are met, when milestones are achieved, and celebrate together.  STAFF TRAINING Staff should: Know the mental disorders commonly associated with developmental disabilities. Be able to identify and understand the ways mental disorders can present in persons with developmental disabilities. Have a comprehensive knowledge of the manner in which the developmental disability and associated underlying conditions affect the response of individuals to psychotropic medications. Understand the risk and benefits of using psychotropic medications in individuals with developmental disabilities. Staff should be familiar with the concept of diagnostic overshadowing as it relates to their clients. Staff should be aware that adaptations from typical practice may be necessary to assess and treat clients with intellectual and developmental disabilities. Clients may need more than one intake session in order to gather appropriate information; the intakes may take longer and may need plans to be presented in picture or audio versions. It may be beneficial to have family members present in the session to provide additional context to assist with understanding as well as historians for past medications and responses to medications. With likelihood of clients with I/DD having lower tolerance to a full therapy session, consider using the remainder of the time providing collateral guidance, education, and support with the caregiver. Staff working with clients with I/DD should be aware of community resources that can assist in addressing developmental disabilities-related symptoms and know how to effectively access these resources. Whenever feasible, clients should be encouraged to reach out independently or with initial supports to learn how to access resources in the community and online. Use of libraries, internet, 211, and other forms of independent living skills should be encouraged whenever possible. As with the general population, individuals with I/DD can experience co-occurring substance abuse problems. The presence of substance abuse should be assessed, and resources identified. See: Kennedy Krieger Institute’s Center for Autism and Related Disorders (CARD) “Early Signs of Autism Video Tutorial” TED Talk by pediatrician Wendy Chung, MD "Autism - what we know (and what we don’t know yet)" SUPERVISION AND CONSULTATION Staff should seek consultation in order to adapt assessment methods and treatment interventions, such as evidence-based practices, to an individual’s cognitive skills and adaptive functioning. Since best outcomes include a clinician’s ability to approach the clinical cases in a complex, multi-dimensional manner resulting in less likelihood of diagnostic overshadowing, staff should always seek consultation and additional supervision with I/DD client cases. RESOURCES In Los Angeles County only - Alliance for Children’s Rights  Americans with Disabilities Act (ADA)  Diagnostic and Statistical Manual of Mental Disorders, American Psychiatric Publishing, 5th edition Spotlight on Disability Newsletter, September 2016, American Psychological Association  California Department of Developmental Services: Systemic, Therapeutic, Assessment, Resources, and Treatment (START)  Diagnostic Manual – Intellectual Disabilities (DM-ID-2) 2016: A textbook of Diagnosis of Mental Disorders in Persons with Intellectual Disability.   Early Start Family Resource Centers Network of Los Angeles County  Help Me Grow LA  If I Need Help  L.A. Found  Los Angeles County Departments/Regional Centers Liaisons  Los Angeles County Regional Center and Family Resource Center Locator  National Association for Dually Diagnosed (NADD)  Regional Centers-to-LACDMH Service Areas Crosswalk  The Epidemiology of Psychopathology in People with Intellectual Disability: A Forty-Year Review International Review of Research in Developmental Disabilities