Mental Health Project

Purpose. The purpose of the Mental Health Project of Spectrum Institute is to promote improved access to a full range of mental health therapies for adults with intellectual and developmental disabilities.

Focus. The project focuses on the role of guardians, conservators, and others who have assumed primary caregiving responsibilities for this special needs population.  These individuals are mental health therapy fiduciaries.

Mission. The mission of the project is to educate these fiduciaries about their duty to take the necessary steps to implement the right of adults with intellectual and developmental disabilities to have prompt access to the necessary and appropriate mental health therapies they need.  The mission also includes the education of self advocates and family advocates on the right to mental health therapy and how to ensure that court-appointed agents and those who have assumed caregiving responsibilities fulfill their fiduciary duties.

Methods. The project accomplishes its mission through research, education, and advocacy. In addition to working with advocates and mental health fiduciaries, it also reaches out to primary care physicians who are often the gatekeepers to mental health services, and to psychologists, psychiatrists, social workers, and other licensed mental health professionals.

Legal Principles*

The constitution protects the right of adults to make their own medical decisions. (Cruzon v. Missouri (1990) 497 U.S. 261, 262; Thor v. Superior Court (1993) 5 Cal.4th 725, 731)

People with developmental disabilities have the right to full participation in society and to equal access to health care services. (ADA Section 12101; Wash. Rev. Codes Section 71A-10.030)

When courts give the power to make health care decisions to guardians or conservators, these fiduciaries should be proactive. They have a legal duty to become aware of the need for, and to arrange for, appropriate mental health treatment for adults under their care. (Daily Journal Commentary)

There are a wide range of mental health therapy options available for people with intellectual and developmental disabilities, including therapies to treat trauma, depression, anxiety, and PTSD. (“Intellectual and Developmental Disabilities: A Bibliography on Trauma and Therapy” [Part One: Books] [Part Two: Articles and Other Resources])

Individuals with intellectual and developmental disabilities have a right to prompt medical care. (Cal. Welf. & Instit. Code Section 4502(b)(4)) Therapy is essential for those who have experienced abuse.
 
Additional qualified professionals are needed to provide therapy for individuals with intellectual and developmental disabilities. Those already working in this field should improve their skills with in-service training. Trauma-informed therapy should be included in all training programs.
 
Care providers who deprive necessary health care services to dependent adults in their custody or care commit dependent adult abuse. (Wash. Rev. Codes Section 74.34.020(16)) Medical care includes mental health therapy. Deliberate indifference to medical and mental health needs is unconstitutional. (Doty v. County of Larsen (9th Cir. 1994) 37 F.3d 540, 546)
 
People without disabilities have access to a full range of mental health therapies. It is disability discrimination for guardians, conservators, or other care providers to deprive individuals with disabilities access to a full range of mental health therapy options. (Federal Law: Americans with Disabilities Act; State Law: Cal. Gov. Code Section 11135; Wash. Rev. Codes Section 49.60.030) 

*These legal principles have been endorsed by: National Disability Rights Network, The Arc of California, California Siblings Leadership Network, Autistic Self Advocacy Network, TASH, Washington Autism Alliance and Advocacy, Disability Rights Legal Center, Mental Health Advocacy Services, Louisiana State Nurses Association, and Different Brains.

For a PDF version of this page, click here. 
For more information on disability, abuse, and therapy, click here.

Tina BaldwinProject Director email
Thomas F. Coleman Legal Director email
Tanner Coe
Intern
email


Project Advisors

Thomas Buckley, Ed.D. has an impressive curriculum vitae.  For the past two years, he has been the Director of Population Health at YAI — a world class organization providing exceptional-quality, culturally competent, person-centered services and supports to over 20,000 persons with intellectual and developmental disabilities.  Prior to that, Dr. Buckley was the CEO and founder of The Buckley Medical Home —  operated by a collaborative transdisciplinary team offering a healthcare delivery approach focusing on the whole person with an Intellectual/Developmental Disability (I/DD) and/or mental health conditions including progressive dementia.  He also serves on the board of directors of the Commission on Accreditation of Rehabilitative Facilities.  CARF International is an independent nonprofit organization that has accredited over 57,000 agencies, certifying that they meet specialized standards of care for mental health.

Simone Ebbers MSc. is a healthcare psychologist, child psychologist, psychotraumatherapist and EMDR-practitioner.  Simone has been working in secondary and higher vocational education. She also worked as a behaviour specialist within a treatment centre for children and teenagers with a mild intellectual disability and psychiatric issues.  Since 2013 she runs a private practice assessing and treating trauma and sexual abuse, and specializes in working with people with intellectual disabilities.  Next to the clinical work, Simone also works as an educator, trainer, supervisor and adviser. In 2002, she wrote a study book on sexuality and sexual abuse for care providing professions. She is also co-author of: Psychological First Aid for people with intellectual disabilities who have experienced sexual abuse.

Reverend William C. Gaventa is the chair of the National Collaborative on Faith and Disability and Director of the Summer Institute on Theology and Disability. As writer and author, Rev. Gaventa served as Editor of the Journal of Religion, Disability, and Health from 1996-2010. He edited the newsletter for the Religion and Spirituality Division of the American Association on Intellectual and Developmental Disabilities, was an adviser for the Spiritual and Religious Supports Series for Exceptional Parent Magazine, and was a columnist for Insight, the national newsletter of the Arc USA. Rev. Gaventa is the author of Disability and Spirituality: Recovering Wholeness (Baylor University Press – 2018)

Dr. Matthew P. Janicki is co-chair of the National Task Grroup on Intellectual Disability and Dementia Practices. He is a member of the Federal Advisory Council on Alzheimer’s Research, Care, and Services.  Dr. Janicki is an associate professor in the Department of Disability and Human Development at the University of Chicago.  He is also a research professor with the University of Maine’s Center on Aging.  Dr. Janicki is the author of many books and articles on aging, dementia, public policy, and rehabilitation of people with intellectual and developmental disabilities, including Dementia, Aging, and Intellectual Disabilities: A Handbook.

Marshall B. Kapp, J.D., M.P.H. (Colleges of Law & Medicine) was educated at Johns Hopkins University (B.A.), George Washington University Law School (J.D. with Honors), and Harvard University School of Public Health (M.P.H.).  Now a Professor Emeritus, he was the Founding Director of the Florida State University Center for Innovative Collaboration in Medicine and Law from 2010 through 2017, with faculty appointments as Professor, Department of Geriatrics, FSU College of Medicine, and Professor of Medicine and Law in the FSU College of Law.  He also was a Faculty Affiliate of the FSU Pepper Institute on Aging and Public Policy and the FSU Institute for Successful Longevity.  He currently is an Adjunct Professor, Stetson University College of Law (teaching in the Elder Law LLM program) and an Adjunct Professor at the FSU College of Law (teaching in the Juris Masters program).  Earlier, Kapp served as the Garwin Distinguished Professor of Law & Medicine at Southern Illinois University School of Law and School of Medicine and as Co-Director of the School of Law’s Center for Health Law and Policy (2003-2009).

Biza Stenfert Kroese is a Consultant Clinical Psychologist and a Senior Researcher in the School of Psychology at the University of Birmingham, UK, and Chair of CanDo, a support service for parents with intellectual disabilities. Dr. Stenfert Kroese is co-author of Cognitive Behaviour Therapy for People with Intellectual Disabilities: Thinking Creatively (Palgrave Macmillan 2017). The book is based on the authors’ clinical experiences and introduces novel approaches on how to adapt CBT assessment and treatment methods for individual therapy and group interventions. It explains the challenges of adapting CBT to the needs of clients with intellectual disabilities and suggests innovative and practical solutions.

Gary LaVigna, Ph.D. is the Clinical Director of the Institute for Applied Behavior Analysis in Los Angeles. He spends much of his time consulting with organizations on establishing nonaversive behavior support plans for individuals exhibiting severe and challenging behaviors and presenting seminars on the topic throughout the world. Dr. LaVigna’s work is reported in numerous articles and his coauthored books, such as Alternatives to Punishment, Progress Without Punishment and The Periodic Service Review: A Total Quality Assurance System For Human Services and Education. He is also coauthor of New Directions in the Treatment of Aggressive Behavior for Persons with Mental and Developmental Disabilities. (Nova Science Publishers, Ltd. 2015)

Daniel B. LeGoff. Ph.D., LS. is a licensed and board-certified pediatric neuropsychologist and the pioneer of LEGO® Therapy. He specializes in the assessment and treatment of neurodevelopmental and neurobehavioral conditions in infants, children, and adolescents. He is the author of LEGO®-Based Therapy: How to build social competence through LEGO®-based Clubs for children with autism and related conditions (Jessica Kingsley Publishers 2014). Action for Aspergers says this about the book: LEGO-Based Therapy defines a particular therapeutic approach. Its aim is to provide a social development intervention for children with Autism Spectrum Conditions (ASCs). LEGO-Based Therapy teaches turn taking, sharing, making eye contact when needed and social rules adherence (using greetings). Children are encouraged to swap roles and tasks and engage in intelligent conflict resolution and social problem solving with very little adult intervention.” More recently, Dr. LeGoff wrote How Lego-Based Therapy for Autism Works. Through a series of case studies, the book explains how and why Lego therapy helps to promote the development of social skills for children with autism spectrum disorders (ASDs) and related conditions.

Randall Phelps, M.D., Ph.D. is a Developmental and Behavioral Pediatrician and Associate Professor of Pediatrics at the Child Development and Rehabilitation Center, Institute on Development and Disability, Oregon Health and Science University. Dr. Phelps attends on interdisciplinary teams to provide diagnostic assessments and care to children with developmental disabilities and/or behavioral conditions throughout the state of Oregon and surrounding states.  He is co-editor of Trauma, Autism, and Neurological Disorders Integrating Research, Practice, and Policy (Springer 2018) Topics featured in the book include: the neurobiological contributors to posttraumatic stress disorder (PTSD); fetal alcohol spectrum disorders and its diagnosis in children with a history of trauma; interventions for trauma and stressor-related disorders in preschool-aged children; reactive attachment disorder (RAD) and autism spectrum disorder (ASD) diagnosis and care in a cultural context; special population consideration in ASD identification and treatment; and trauma and neurodevelopmental disorders from a public health perspective.

Aafke Scharloo MSc. is a fully licensed clinical psychologist and a remedial educationalist. She began in the late 1980s as a pioneer in the approach to sexual abuse in people with intellectual disabilities and has been involved in this subject ever since. Aafke is also forensic interviewer and one of the designers of the of Minimal Facts Interviews in suspicions of sexual abuse in the Netherlands. She works throughout the Netherlands as an expert for service providers and healthcare professionals, parents and people with developmental disabilities themselves. She also works with the police and justice system on issues concerning this subject. Alongside substantive clinical work, Aafke also works as an educator, trainer, supervisor and adviser. Aafke gives national and international lectures and publishes articles in journals and books and is a member of the ISPCAN working group on children with disabilities. She is independently established and specialist in issues concerning people with developmental disabilities, sexual abuse, maltreatment and trauma.  She is co-author of Psychological First Aid for People with Intellectual and Developmental Disabilities Who Have Experienced Sexual Abuse (Jessica Kingsley Publishers 2016). 

Nirbhay N. Singh, Ph.D., FAPA, FAPS, BCBA-D, is a Clinical Professor of Psychiatry and Health Behavior at the Medical College of Georgia at Augusta University.  He is also the CEO of MacTavish Behavioral Health LLC, an agency devoted to training, research and consultation focused on people who are disabled or disenfranchised. Formerly, Dr. Singh was a Professor of Psychiatry, Pediatrics, and Clinical Psychology at the Virginia Commonwealth University School of Medicine.  He is the author of 750 publications, including 26 books.  His research interests include mindfulness, mental health, assistive technology, intellectual and developmental disabilities, Alzheimer’s disease, post-coma patients, amyotrophic lateral sclerosis and multiple sclerosis. Among his recent books, Dr. Singh has edited Early Intervention for Young Children with Autism Spectrum Disorder (with Lang and Hancock), Handbook of Evidence-Based Practices in Intellectual and Developmental Disabilities, and Handbook of Positive Psychology in Intellectual and Developmental Disabilities (with Shogren and Wehmeyer). For about 30 years, Dr. Singh was an expert consultant in psychology, psychopharmacology, protection from harm, special education and mental health with regard to the care of people with disabilities for the Civil Rights Division of the Department of Justice (DOJ) in Washington, DC.  The DOJ investigates violations of the Civil Rights of Institutionalized Persons Act.

Martine Spijker MSc. is a healthcare psychologist, EMDR-practitioner and psychotraumatherapist. She co-founded a treatment centre for helping children and young adults with mild intellectual disabilities and trauma. Martine also runs a private practice specialising in treating trauma and sexual abuse in children, teenagers and young adults. Co-author of:  Psychological First Aid for people with intellectual disabilities who have experienced sexual abuse. A step by step programme (2017).