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Leadership in IDD

         March 2021



Perspectives

Commentary from the field


Values and Outcomes for the Field of Intellectual and Developmental Disabilities
Richard Chapman, MA
Kansas University Center on Developmental Disabilities

I think it is our responsibility as a field to provide the best quality of outcomes for the people that we serve. One may ask, how do you measure outcomes? If I were writing this from a strictly medical perspective, I might say that the goal must be to reduce deficits and normalize functioning much as possible. I might argue that specialized residential settings are necessary to work on deficits. I might believe that I know what outcomes are best or right for people with IDD. Fortunately, I am a member of AAIDD, and I choose not to focus on deficits. I have instead chosen to focus on how best we can support people to live the lives they choose.

The ultimate question must be “What outcomes do we seek as a field?” I think a way to measure our success as a field is by focusing on supporting individuals that we serve to live the life that they choose. I think individuals with IDD know what is best or right for them. They know how they want to live. They do not want to live segregated lives but want to live in the community where they feel supported to make their own decisions and are valued. This may be the best measure of outcomes quality for the people that we serve.


Melissa_DeSipio


Providing Community Health Care During a Pandemic

Melissa DiSipio, MSA, FAAIDD
Philadelphia Coordinated Health Care (PCHC), SE Region Health Care Quality Unit (HCQU)

The change came fast and furious…working from home, previously only an option for a select few became mandatory for the masses. As I helped my staff at PCHC transition, we initially struggled with how we were going to continue to provide quality community health care for people with IDD.

We were forced to “make lemonade out of lemons” and quickly changed the way we provide services. We saw some immediate positive results, for example we discovered that assessments and comprehensive reviews were easier to schedule remotely via zoom. We also saw the reach of our on-line and webinar-style trainings skyrocket. Some of the positive outcomes that have come out of this tumultuous time are the development of greater and easier access to both physical and behavioral telehealth care for people with IDD.

While I no longer feel like we are working underwater, we are still in the weeds. Obtaining vaccines for individuals with IDD, direct support professionals, and family caregivers is our new priority, while we continue to struggle to figure out what the new normal will look like. I’m grateful for the continued collaboration and support, even remotely, of my AAIDD colleagues, and am hopeful for more positive change in the near future.


New Resources

Written, recorded, and other references

AAIDD Religion & Spirituality Interest Network 2020-2021 Series, Black Lives with IDD and Their Faith Communities, video archive now available

The 12th edition of AAIDD’s Intellectual Disability: Definition, Diagnosis, Classification, and Systems of Supports was published in January 2021.

  • Co-authored by Bob Schalock, Ruth Luckasson, and Marc Tassé
  • Advisory committee included Giulia Balboni, Alixe Bonardi, Serafino Buono, Wil Buntinx, Atilla Cavkaytar, Luigi Croce, Deborah Fidler, Sandra Friedman, Glenn Fujiura, Lisa Greenman, Susan Havercamp, Amy Hewitt, Sheri Larson, Kevin McGrew, Laura Lee McIntyre, Diane Morin, Elizabeth Perkins, Rick Rader, Anthony Rodriguez, Sofia Santos, Karrie Shogren, Peter Smith, Roger Stancliffe, Jim Thompson, Miguel Verdugo, Mian Wang, Michael Wehmeyer, and Keith Widaman

The APA’s two-volume set, APA Handbook of Intellectual and Developmental Disabilities was published in December 2020.

  • Co-edited by Len Abbeduto, Laura Lee McIntyre, and Marc Tassé
  • Chapters co-authored by Len Abbeduto, Giulia Balboni, Erik Carter, Jill Crane, Susan Copeland, Kristin Dell’Armo, Debora Fidler, Susan Havercamp, Amy Hewitt, Linda Hickson, Bob Hodapp, Ruth Luckasson, Sandy Magaña, Laura Lee McIntyre, Kevin McGrew, Greg Olly, Bob Schalock, Jerry Smith, Marc Tassé, Angela Thurman, and Michael Wehmeyer

Val Bradly co-authored the book Self-Direction: A Revolution in Human Services (SUNY Press, available soon).

Trevor Parmenter co-authored the chapter, Disposable Lives: Is Ending the Lives of Persons with Intellectual and Developmental Disabilities for Reasons of Poor Quality of Life an Emergence of a New Eugenics Movement? in Mental Health, Intellectual and Developmental Disabilities and the Ageing Process, 2nd Ed. (2021, Springer).

Edward Polloway co-authored the book, Introduction to Intellectual Disability, Autism, and Developmental Disabilities (ProEd, available soon).

Miguel Vergudo co-authored the Spanish adaptation of the Diagnostic Adaptive Behavior Scale (Tea Ediciones)


Member Spotlight

Mayumi Hagiwara

Mayumi Hagiwara, PhD
Assistant Professor of Department of Special Education at San Francisco State University
AAIDD Member Since 2016

AAIDD Leadership Positions:
International Interest Network, Co-Chair (2018-present)
Student and Early Career Professionals Interest Network, Secretary (2018-2019); Co-Chair (2019-present)

Why did you join AAIDD?
Because all my professors at University of Kansas were seasoned members of the AAIDD! Also, ever since the first conference I attended in Atlanta, AAIDD became my professional home. AAIDD conferences offer the best reunions with the experts, where I can learn the most up-to-date research and practices in this field.

Why did you choose the field of intellectual disability?
I did not choose this field, but my sister with intellectual disability has led me to seek opportunities to learn and thrive as a scholar in this field. My sister is the driving force to continue to expand my expertise to improve quality of life for people with intellectual and developmental disabilities.


Notables

Recent awards, accolades, appointments, and other honors

Dan Zhang and Joyce Louden were elected to the 2021-2022 AAIDD Board of Directors.

Evan Dean, Laura Gomez, Julie Grieves, Dorothy Hiersteiner, Bruce Keisling, Elizabeth Watts, Don Miller, Anthony Rodriguez, Hilda Trahan, Kendra Williams-Diehm and Heather Williamson were named Fellows of the AAIDD.

Sheli Reynolds was named the Chair of the AAIDD Families Interest Network.

Maggie Nygren joined the Council on Quality Leadership|CQL Board of Directors.


Linkages

Opportunities to participate in research, projects, policy development, and other collaborations

Survey from Alice Bacherini, Susan Havercamp, and Guilia Balboni seeks US stakeholders for their impressions of physicians’ beliefs about adults with IDD


Produced by AAIDD, this monthly digest features the recent (first made available within last 3 months) and emergent (will be available within the next 4-6 weeks) work of AAIDD members only. Journal articles, while important, are not featured in this publication.

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