Hello and welcome to the AAIDD-WI Resources page! Information is added frequently, so please check back often. If you have information you would like to see added or problems with this page (e.g., broken links), please contact aaiddwi@gmail.com. Page content and links are provided as a public service only.
Assessment
These articles are freely available on the internet. Click the name to read the article (link will open a new window):
Convergent Validity: Use of WAIS-IV vs. SB5 in Intellectual Functioning Assessment (2015)
Stanford-Binet & WAIS IQ Differences and Their Implications for Adults with Intellectual Disability (2010)
A Guide to Child Nonverbal IQ Measures (2004)
Supports Intensity Scale (SIS): The SIS evaluates the practical support requirements of a person with an intellectual disability through a positive and thorough interview process. It was developed by AAIDD National.
Autism
Autism Learning Styles: Brief video of Glenis Benson, PhD discussing how cognitive processes common in people with Autism affect learning styles, with concrete example.
FreeSpeech: Click to view a TED Talk by Ajit Narayanan who, while working with kids who have trouble speaking, sketched out a way to think about language in pictures, to relate words and concepts in “maps.” This idea powers an app (Avaz) that helps people communicate. Ajit also discusses a language concept called FreeSpeech.
Fatty Acid Binding Proteins, Autism, and Schizophrenia: As announced in the NADD Newsletter, Vol 7, number 15: In a study published in Human Molecular Genetics, neuroscientists at Japan’s RIKEN Brain Science Institute conclude, “In summary, this study suggests that dysregulation or dysfunction of brain expressed FABPs [fatty acid binding proteins] could represent a disease pathway linked to the lipid metabolic abnormality theory of schizophrenia and ASD. Further research, including the examination of other ethnic populations, is needed to utilize the lipid system in the generation of preventive and more beneficial therapies for patients with schizophrenia and ASD.” Clicking on the link opens a PDF.
Burnout & Self-Care
Concerned about personal or staff burnout? Read these articles:
Burnout in Mental Health Services
Work Stress and Depression Among Direct Support Professionals
Work Stress, Burnout, and Social and Personal Resources among Direct Care Workers
Michael Bloom’s PowerPoint presentation from our 2015 conference: Bloom AAIDD WI Keynote 2015
Dementia
Dementia Scale for Down Syndrome (DSDS): Despite the name, the DSDS can be used with individuals who do not have Down Syndrome. It tracks changes in behavior over time, using informant information. Only psychologists/psychometrists with university training in standardized testing and with experience in administering intelligence tests are qualified to purchase and use the DSDS. The above link takes you to Dr. Gedye’s website for more information and ordering.
Down Syndrome Dementia Questionnaire: Located online at the Down Syndrome Guild of Greater Kansas City website: “The Down Syndrome and Dementia Questionnaire is a tool which will assist families and caregivers in acquiring information on daily functioning skills for a person with Down syndrome. The questionnaire is useful for taking data across a number of years and date collected can be shared with medical professionals should a decline in functioning occur. We recommend families begin taking baseline data at age 30 and keep the documents in an accessible place for various family members to review and refer to over the years. You may wish to consult your primary care physician or neurologist before using the questionnaire as they may have additional advice or measurement tools they recommend.”
Equestrian Therapy
Willow Creek Ranch in Mukwonago, WI. Is a non-profit program providing therapeutic riding to adults and children with special needs to enhance their physical, emotional and cognitive development though the use of equine-assisted activities and therapies.
Finances
Retail Savings Guide for People with Disabilities: This webpage provides numerous links on a variety of financial and savings topics.
Genetics
GeneReviews are expert-authored, peer-reviewed disease descriptions (“chapters”) presented in a standardized format and focused on clinically relevant and medically actionable information on the diagnosis, management, and genetic counseling of patients and families with specific inherited conditions. Published exclusively online, each chapter is: (1) reviewed for accuracy by editors expert in clinical genetics, laboratory genetics, and genetic counseling; (2) peer-reviewed by internationally acknowledged subject experts; (3) updated by the author(s) in a formal comprehensive process every two to three years or as needed; and (4) revised by the author(s) or editorial staff whenever significant changes in clinically relevant information occur. Free access.
Online Mendelian Inheritance in Man (OMIM): Another great online resource that catalogs research on human genes and genetic disorders.
The Lancet published an article (12/17/14) and commentary (both open access) on genetic reasearch from the Deciphering Developmental Disorders (DDD) study in the United Kingdom (UK). The aim of the DDD study is to advance clinical genetic practice for children with developmental disorders by the systematic application of the latest microarray and sequencing methods while addressing the new ethical challenges raised…click here to visit the DDD website.
Questions about genetics? Finding technical vocabulary confusing? Check out Genetics Home Reference supported by the National Institutes of Health.
Home Modifications
Home Remodeling for Disability and Special Needs: An article highlighting various issues when remodeling, with a list of sources at the end of the article.
Resources and Funding Strategies for Making Homes Assessable : A very well written guide for navigating private and public funding for home modifications.
Mental Health
Happiness Assessment: Developed by Karyn Harvey, PhD, the Happiness Assessment highlights the importance of having a good life.
The Skills System: The Skills System is a set of nine coping skills and three system tools that we can use to handle our emotions, thoughts, and actions in ways that help us reach our personal goals. It was developed by Julie Brown, LICSW and is based on Dialectical Behavior Therapy. Click here to watch Ms. Brown’s presentation at the 9th Annual Yale NEA-BPD Conference in 2013.
The Center Cannot Hold: Although this book does not relate to IDD, Elyn Saks provides powerful insights into living and coping with Schizophrenia, as well as discussing rights issues. For more information, read this article. You can also view her presentation on TED Talks: “A legal scholar, in 2007 Saks came forward with her own story of schizophrenia, controlled by drugs and therapy but ever-present. In this powerful talk, she asks us to see people with mental illness clearly, honestly and compassionately.”
Psych-DD listserv: Click on this link to join. The Psych-DD listserv is the official open discussion list of the AAIDD Psychology Division and AAIDD Mental Health Services Special Interest Group (MHS SIG). An e-mail discussion list is an e-place (psych-dd@listserv.nodak.edu) that you can send a comment to, and it distributes it to every member of the list. You also receive the e-mail that others send to the list. This is a service of AAIDD, but you DO NOT need to be an AAIDD Member to join this list. You can also search the listserv archives (again, you do NOT need to be a member of the list to search the archives).
Hip Hop Psych: Do you have clients, friends, or family members who love rap or hip hop music? Turns out that this is a great tool for talking about mental health; check out the Hip Hop Psych page to find out more! On a separate note, check out the aptly titled article The Ten Best Family-Friendly Rap Albums.
Fetal Alcohol Spectrum Disorders: A thorough and well-written description of the effects of FASD and associated risks.
Milwaukee County Crisis Services
Community Consultation Team (CCT): CCT is available to assist community service providers by phone or in-person during client behavioral crises. The team will work with providers to try to diffuse a crisis, help connect providers to appropriate resources and alternate services (e.g., respite care) if indicated, and work with other providers of emergency services. CCT will also be available to follow up with residential or day program providers after a crisis to help modify or develop plans to try to prevent future crises. Click here to open a pdf of CCT’s brochure.
Movement and Dance
Virtual Dancing for Disabilities: Helen Winkler and her daughter Rita (who has Down syndrome) are regularly posting a series of Youtube and Facebook dances that they call Living Room Dances because they occur in their living room. These dances all come from an adapted dance program that Helen teaches in Toronto for people who have intellectual disabilities. Some are modified folk dances and others are dances that they have created within their dance community to suit their participants. They intend to continue with their weekly postings until they have recorded all the dances that their group has done over the past 14 years: https://sites.google.com/view/
Positive Behavior Supports (PBS)
Positive Behavior Support – Nevada
Technical Assistance Center on Social Emotional Intervention for Young Children (TACSEI)
Positive Behavioral Interventions and Support: The Technical Assistance Center on Positive Behavioral Interventions and Supports is established by the U.S. Department of Education’s Office of Special Education Programs (OSEP) to define, develop, implement, and evaluate a multi-tiered approach to Technical Assistance that improves the capacity of states, districts and schools to establish, scale-up and sustain the PBIS framework. Emphasis is given to the impact of implementing PBIS on the social, emotional and academic outcomes for students with disabilities.
Sexuality
Disability and Sexuality Access Network (DASAN): Network of primarily self-advocates with disabilities, advocating for and educating about disability, sex, and sexuality.
Ethical Dilemmas: Sexuality and Developmental Disability: Published in 2002 by NADD, this book addresses issues and questions and provides recommendations and suggestions through research and expert consensus. Numerous case studies are used throughout to identify issues; topics include sex education, consent to treatment, sexual abuse prevention, sexual offenses, policies and procedures, parenting, human rights, legal perspectives to consent, and reporting sexual assault….for more information, click the link above to go to the NADD store.
Heart Consulting: A Wisconsin-based organization that provides support and education to reduce sexual and domestic violence against people with disabilities. They regularly share resources, recommendations, and upcoming events on their website, within a newsletter, and on their Facebook page.
Sexuality for All Abilities: A resource to help parents and caregivers learn how to have conversations with children and adults with disabilities around dating and sex.
Sleep
Best Mattress Reviews: Mattress and Bedding Guide for People with Disabilities.
Social Security Disability Benefits
Social Security Disability Benefits Guide: Understand how Social Security disability works and how to calculate your benefits.
Spirituality
Faith Inclusion: Supporting people of all abilities in their faith communities.
Training and Webinars
The Arc: National Center on Criminal Justice and Disability (NCCJD): “Providing accurate, hands-on training materials for criminal justice and disability professionals is priority one for NCCJD. Our goal is to significantly raise awareness around this fact: People with disabilities are at a disadvantage in our current criminal justice system, whether as victims, witnesses, suspects, or offenders.” Webinars and videos available online.
Waisman Center Community Ties program: “Training and Consultation offers learning opportunities for caregivers, support brokers/case managers, individuals with disabilities, families, program administrators/supervisors and anyone interested in learning more about related topics in the field of Developmental Disabilities.”
Wisconsin Occupational Therapy Association annual conference: Is a wonderful opportunity to network and connect with Wisconsin’s Occupational Therapy community. The next conference is being held October 6th and 7th 2017.
Trauma
The following sources are not specific to the IDD population but are included due to the high rate of traumatic events in the lives of people with IDD.
ATTACh: Association for Training on Trauma and Attachment in Children.
Childhood Trauma, Affect Regulation, and Borderline Personality Disorder: Youtube video of Dr. van der Kolk’s presentation as part of the 9th Annual Yale NEA-BPD Conference in 2013.
Developmental trauma disorder: Towards a rational diagnosis for children with complex trauma histories by Bessel A. van der Kolk, MD. The above link opens a pdf of Dr. van der Kolk’s proposal to include Developmental Trauma Disorder in the DSM-5. However, in the end, it was not added as a diagnosis. In The Body Keeps the Score Dr. van der Kolk summarizes decades of his research in a well-written book.
The National Child Traumatic Stress Network (NCTSN): This website provides a wide array of trauma treatment information, resources, and products for parents, children, military families, professionals, educators, and media. This includes a detailed but accessible description of why trauma assessment is important and also a list of standardized measures of trauma. Virtually all sources of trauma are addressed. Although NCTSN focuses on children, much of the information applies to adults (after all, adults once were children).
Trauma Geek: Neuroscience Education for Parents and Helping Professionals.
Trauma Informed Care Toolkits for 13 different groups: Click to open the ACESs Connection article with links to numerous resources.
Trauma-Informed Interventions with Individuals with Developmental Disabilities: The title is self-explanatory and links to a PowerPoint presentation by Karyn Harvey, PhD, presented during an AAIDD webinar.
UW-Madison Conference on Child Sexual Abuse: An annual conference in October providing “the latest academic and evidence-based research for those who work with sexually abused children, adults who were abused as children, and offenders.”
Zika Virus
How this mother keeps hope alive after Zika virus: An article at PBS Newshour site describing a mother’s struggles after her daughter was born with microcephaly in Washington state. The mother was exposed to the disease in Mexico.
The Lancet Zika Virus Resource Centre: The Lancet Zika virus resource centre brings together the best evidence from across The Lancet family of journals—offered with free access—to assist researchers, policy makers, and health workers, in understanding the effects of the outbreak and how best to respond.
Other IDD-Related Organizations
Clicking on the links below will take you to the organizations’ websites.
Association of Professional Developmental Disabilities Administrators: The Association of Professional Developmental Disabilities Administrators is devoted to the support of administrators of ICF-IDD residential programs as well as other individuals with interests in the field of intellectual disabilities and other developmental disabilities.
Accessible Theater for All! Pink Umbrella Theater
Mental Health Services Special Interest Group of AAIDD: Focusing on the needs of people experiencing mental health with intellectual/developmental disabilities (MHIDD). This site contains links to many resources.
NADD: An Association for Persons with Developmental Disabilities and Mental Illness.
National Alliance for Direct Support Professionals: “Together, we are working to enhance the status of direct support professionals and promote the development of a highly competent human services workforce. We recognize that people needing support are more likely to fulfill their life dreams if they have well-trained, experienced, and motivated people at their side in long-term, stable, compatible support relationships.”