Transition - INformation Network

Supported Decision Making (SDM)

Supported decision making (SDM) is one alternative to guardianship. It a tool that allows people with disabilities to make their own decisions and build their own lives with support from a team of people they choose. A person using SDM can select trusted advisors, such as friends, family members, or professionals, to serve as supporters, who agree to help the person with a disability understand, consider, and communicate decisions, giving the person with a disability the tools to make her own, informed, decisions.

Where to Start?

Sample Supported Decision-Making Agreements:

January 25, 2021 HANDS in Autism Advocacy, Behavior, Diagnosis, Diversity, Mental Health, Research, Transition, Uncategorized

Videos From Autism Science Foundation Annual Day of Learning

The Day of Learning at the Autism Science Foundation (ASF), is a TED-style science conference that brings together leading autism researchers to present new findings to members of the autism community. Due to the coronavirus pandemic, this year’s Day of Learning was held virtually. Over 800 people from across the world took part in the event.

Below are links to recorded presentations paired with ways to learn more on topics on the INformation Network website.

Do We Need New Terms for Autism? – Dr. Catherine Lord – School of Medicine at UCLA

Dr. Lord called for a new term: “profound autism.” Announced publicly for the first time at the Day of Learning, the term is intended to help individuals with the highest level of needs gain access to appropriate services and to increase research participation by this understudied subpopulation.

Autism Research in 2020: What Do We Know? What Do We Need? – Dr. James McPartland – Yale Child Study Center

Dr. McPartland explains that many of the advancements made this year amid the pandemic will benefit individuals on the autism spectrum long after the current crisis is over.

Developing Personalized Social Interventions for Adolescents with Autism – Dr. Matthew Lerner – Stony Brook University

Dr. Matthew Lerner explained how he and his team are moving toward an “evidence-based menu” of interventions to develop social skills in adolescents with autism, which will allow families to take more targeted actions to improve outcomes.

Is ABA Passe? – Dr. Melanie Pellecchia – University of Pennsylvania

Dr. Pellecchia outlined some of the historic problems of applied behavioral analysis (ABA) and showed how increased knowledge of childhood development has significantly improved the practice in recent years, with a greater emphasis on fun, play-based therapy sessions and a de-emphasis on “teacher-led, didactic” sessions.

Research on Adults with Autism in Natural Settings – Dr. Vanessa Hus Bal – Rutgers University

Dr. Hus Bal argued that while support for adults with autism often focuses on the transition to adulthood and associated milestones, there is not enough being done to provide adults with ongoing support throughout their lives.

Robots as Autism Therapy Partners – Dr. Brian Scasselatti – Yale University

Dr. Scassellati demonstrated the powerful effect that robots can have as autism therapy partners and explained what parents should look for in evaluating these solutions.

Considerations for Medical Transition

What is healthcare transition?

Healthcare transition is an individualized process used to address the comprehensive health care needs of children as they age into adulthood and is designed to maximize lifelong functioning and potential by providing patient-centered care during that transition (Rast et al., 2018).

Why does healthcare transition and healthcare plan improve outcomes?

Improved healthcare transition and comprehensive health care can improve the health outcomes of individuals with ASD. Yet, fewer than 10% of youth with ASD meet the national transition core outcome (Walsh et al., 2017). Young people with special health care needs, including autism, often have:

more outpatient and inpatient hospital visits that are longer in mean duration,
more emergency department visits,
more primary care and psychiatric visits,
more health care claims, and
higher health care expenditures than their peers (Rast et al., 2018).

Transfer to Adult Care

What is a recommended healthcare transition timeline for providers?

Recommended Health Care Transition Timeline for Providers is as follows:

Age 12: Make youth and family aware of transition policy
Age 14: Initiate health care transition planning
Age 16: Prepare youth and parents for adult model of care and discuss transfer
Age 18: Transition to adult model of care
Age 18-22: Transfer care to adult medical home and/or specialists with transfer package
Age 23-26: Integrate young adults into adult care

Source: Got Transition?

Are You Ready for Transition to Adult Health Care?

Check out Got Transition?

Additional Resources:

Health Care Transitions FAQ

Domains for Independent Living

What are the domains for independent living and community participation?

Independent living and community participation involves at minimum the following:

Leisure and recreation: activities or experiences of interest chosen for fun, enjoyment, or enrichment during time free from obligations
Home maintenance and personal care, including domestic and self care skills, like personal hygiene skills, clothing care, cooking, planning meals, housekeeping, etc.
Community participation: access and use community environments and agencies, including shopping, community and government services, voting, paying taxes, etc.
Transportation/Mobility: ability to travel safely by foot, bicycle, bus, train and/or car
Money management, including managing bank accounts and credit cards
Personal safety and health care both at home and in the community, including the knowledge of personal information, use of pones for emergencies, use of first aid
Communication and interpersonal relationships: ability to communicate basic needs, comprehension of instructions and gestures, and response to commands and prohibitions.
Self determination: ability to know themselves, control their lives, plan and reach their goals and self-advocate

(Cronin, 1996; Halpern, 1994; Nietupski & Hamre-Nietupski, 1997)

Additional Resources:

Columbia Regional Program, ASD Toolkit
Autism Speaks Transition Roadmap to Housing and Residential Supports

September 8, 2018October 17, 2018 Iryna Ashby Advocacy, Behavior, Education, Health, Mental Health, Research, Safety, Transition

Sexual Health Class Research Survey

Individuals with ASD rarely get sufficient and/or reliable information about healthy sexual behaviors from traditional sources, like at school or from parents/caregivers, which often results in an increased risk of becoming victims of sexual crimes or perceived offenders (Brown-Lavoie, Viecili, and Weiss, 2014). Reviews and research related to the sexual health curriculums used within schools or educational settings for individuals with ASD is sparse with some indication of the absence of any existing or adapted curriculum in regular use. Removal of these students from sexual health classes means they are left to obtain information from unmonitored sources.

This brief survey is designed to gain insight from a variety of stakeholders (i.e., family members/caregivers, teachers, school admin, or individuals with a disability) regarding sexual health knowledge and the programs provided within an educational setting for students with disabilities.

As a thank you for your participation, you will receive a PDF info sheet with practical strategies for providing resources and skills teaching materials related to sexual health as a step towards preventing sexual abuse or victimization of individuals with disabilities. Please consider sharing this survey with friends and colleagues alike.

Please contact Naomi Swiezy, Ph.D., HSPP, Director, HANDS in Autism® Interdisciplinary Training and Resource Center at nswiezy@iupui.edu or Tiffany Neal, Ph.D., Assistant Director, HANDS in Autism® Interdisciplinary Training and Resource Center at nealtiff@iupui.edu with any questions, concerns, or additional comments.