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The purpose of the Adults and Elders Program is to promote the health and overall quality of life of adults with developmental disabilities. This values-based program emphasizes an individual’s inclusion, self-determination, productivity, and independence. Promotion of health and quality of life for adults with developmental disabilities requires a broad effort to improve community access, inclusion, and support. Specifically, adults with developmental disabilities need and deserve safe and supportive housing options, continuing education opportunities, access to competitive jobs with living wages, quality health care and wellness programs, and opportunities to build and grow friendships. As a member of the UCEDD and the University of Washington, the Adults and Elders Program is positioned to play a central role in realizing these goals.
An emphasis is placed on addressing issues surrounding the transition from youth age to adulthood. Optimizing healthy outcomes for adults with developmental disabilities requires successful transition from support and services available in childhood and adolescence to those available in adulthood. Many barriers to successful transition currently exist including workforce shortages of knowledgeable, well-trained community health care providers, and inadequate continuing education and training opportunities. The Adults and Elders Program is focusing on the creation and implementation of innovative solutions addressing these barriers.
Adults and Elders
Adults and Elders: Projects
Contact: Gary Stobbe (gastobbe@uw.edu)
Core Function: Clinical Services
The UW Adult Autism Clinic operated by UW Medicine (UWMAAC) is designed to meet the complex needs of individuals over 18 years of age with autism spectrum and related disorders. Launched in 2012, UWMAAC has served thousands of adults and their families in accessing scarce adult medical and behavioral health resources while also providing opportunities for trainees to better understand the needs of autistic adults and adults with IDD. The providers at the Adult Autism Clinic assess the various needs of patients and families and customize care management approaches to assure the best possible patient experience. The clinic provides autism spectrum screening evaluations and behavioral medicine services, including medication management, mental health assessments, and adult transition services, all in an effort to maximize quality of life through the lifespan. In 2021, the clinic moved to the Institute on Human Development and Disability (IHDD). This relocation allowed for more collaborative work with existing IHDD clinics, other UCEDD programs such as the Clinical Training Unit, growth in services such as social work and behavioral health, and opportunities for even more community outreach and healthcare provider training and education.
Contact: Gary Stobbe (gastobbe@uw.edu)
Core Function: Information Dissemination
The Autism Intervention Research Network on Physical Health (AIR-P) is a research network funded through the Health Resources & Services Administration (HRSA) with a goal of improving the physical health and well-being of children and adolescents with Autism Spectrum Disorder (ASD) and other intellectual and developmental disabilities (IDD). AIR-P advances HRSA’s goal of addressing disparities and improving health equity by focusing on individuals from underserved populations across the United States. As a multisite Learning Network, AIR-P provides a collaborative laboratory for developing and testing evidence-based interventions and accelerating the adoption of effective interventions to improve care and reduce disparities. The Research Network provides national leadership in research to advance the evidence base on effective interventions for autistic individuals and individuals with other IDDs, with a focus on addressing physical health and wellbeing across the lifespan. Dr. Gary Stobbe, Director of the UCEDD Adults and Elders Program here at the University of Washington, will guide the UW UCEDD as one of 15 “collaborating research entities” (CRE) across the US. Through this network, local junior researchers will receive guidance through all steps of a research project, from inception of an idea to publication of findings, as well as access critical pilot funding for some selected projects.
Contact: Gary Stobbe (gastobbe@uw.edu)
Core Function: Information Dissemination, Technical Assistance and Outreach Training
The mission of the Autism Coalition of Tacoma (ACT) is to enrich the lives of all individuals and their families in the South Puget Sound impacted by autism and related developmental disabilities. ACT was formed in 2017 as a result of the Simon Family Endowment. The goal of the Simon Family Endowment is to help build, connect and enhance programs and services supporting adults diagnosed with autism spectrum disorder (ASD) and other intellectual disabilities. ACT is a collaboration of the major institutions in the South Sound currently supporting individuals and families impacted by autism. Members of the ACT Professional Advisory Committee were appointed based on their expertise in the field of autism and their knowledge of the South Sound.
Contact: Gary Stobbe (gastobbe@uw.edu)
Core Function: Professional Training, Technical Assistance and Outreach Training
Launched through a Department of Defense grant awarded to Vanderbilt University (Dr. Beth Malow, Principal Investigator), ECHO Autism Adult Healthcare began clinics officially in November 2020. Through this ECHO program, primary care providers across the US are able to share complex patient cases and receive advice from autism specialists ranging from the fields of neurology, psychology, psychiatry, internal medicine, family advocacy, and self-advocacy. Dr. Stobbe is serving on the expert “hub” team panel, and outside of Tennessee (the home of Vanderbilt University), Washington State has the largest representation of “spoke” primary care provider (PCP) participants. PCP participants are receiving CME credit, and are gaining knowledge through case presentation and didactics on topics such as healthcare transition, self-advocacy, sexuality, co-occurring medical conditions, co-occurring behavioral health conditions, post-secondary education and employment, housing and community supports, and life skills development.
Contact: Gary Stobbe (gastobbe@uw.edu)
Core Function: Professional Training, Technical Assistance and Outreach Training
In 2019, the Washington State Legislature provided funding to help us support primary care providers (PCPs) in their ability to diagnose and provide treatment plans for individuals with autism and their families through the ECHO Autism Washington program. ECHO Autism Washington supports PCPs who serve the Medicaid population through the Washington State Centers of Excellence (COE) program. The Washington State COE program was designed to address the Washington State healthcare provider workforce shortage that has contributed to the long waitlist for accessing both diagnostic and treatment services for people with ASD.
Contact: Gary Stobbe (gastobbe@uw.edu)
Core Function: Professional Training, Technical Assistance and Outreach Training
The increase in the prevalence of autism spectrum disorder (ASD) has overwhelmed the medical workforce in Washington State, and there is a clear need for training and education opportunities for existing healthcare providers. The Project Extension for Community Healthcare Outcomes (Project ECHO) framework is an approach that has proven successful in increasing the role and expertise of the practicing community-based primary care provider (PCP), and 2019 saw the continued delivery of “ECHO Autism: Transition to Adulthood” – supporting primary care providers working with adolescents and adults with ASD and related developmental conditions. In cooperation with the University of Missouri and other national experts in the field, Dr. Gary Stobbe (Director, Adults and Elders Program) continued his role as facilitator of this first ever ECHO program launched originally in the Fall of 2018. In 2019, Washington State led with the largest number of primary care participants in ECHO Autism: Transition to Adulthood. Also in 2019, the results of this first ever pilot were published in the journal Autism, highlighting the improvements seen in primary care provider self-efficacy and provider satisfaction in caring for teens and adults with. Stobbe and colleagues continue to expand ECHO Autism: Transition to Adulthood in 2020 with funding from the Department of Defense to further study the design and implementation of the program nationally.
Contact: Jennifer Gerdts (jvarley@uw.edu), Gary Stobbe (gastobbe@uw.edu)
Core Function: Professional Training, Technical Assistance and Outreach Training
The prevalence of individuals with Intellectual and Developmental Disabilities (IDD) has risen significantly in Washington State and nationally. Management of behavioral health conditions in the IDD population by healthcare providers often requires specialized experience and expertise. This combination of factors has contributed to shortages in the workforce in Washington State capable of providing appropriate behavioral health services to the IDD population. The Project ECHO model has been recognized nationally and internationally as an effective method to improve community capacity to treat common, complex chronic conditions and monitor outcomes especially in rural and underserved communities. ECHO IDD Wraparound, launched in September 2020 through a collaboration between UW LEND and the Health Care Authority (HCA), provides teleconsultation and training to provider teams within the HCA Wraparound with Intensive Services (WISe) system. This training leverages technology to share “best practice” knowledge through case presentations, didactic teaching, and places importance on monitoring outcome and impact of the ECHO clinic on clinical practice. In addition to learning through case discussion, didactic material focuses on relevant topics including behavioral health interventions, foundational knowledge of IDD, modifications to behavioral health interventions to improve community-based healthcare provider’s ability to accommodate those with IDD, and critical knowledge concerning access to community resources to benefit individuals and families impacted by IDD. Over 40 “spoke” participants from across Washington State have been joining these 90-minute, twice-monthly clinics.
Contact: Karen Elizabeth Bearss (kbearss@uw.edu)
Core Function: Professional Training, Technical Assistance and Outreach Training
This project aims to create a train the trainer model for the RUBI Parent Training program to enhance skills and support for Wraparound with Intensive Services (WISe) team members providing care for families of youth with autism/intellectual disabilities and co-occurring behavioral health needs. This training will leverage best practice knowledge in principles of applied behavior analysis through didactic teaching and case examples and places importance on monitoring outcomes and impact of RUBI training on clinical practice and caregiver/child outcomes. The goal is to improve the ability of community-based providers to accommodate and support individuals intellectual and developmental disabilities and maximize treatment benefit and supports for caregivers and youth in their community setting.
Adults and Elders
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Contact: Sharan Brown (sbrown@uw.edu)
Core Function: Research and Evaluation
The Parenting with Intellectual and Developmental Disability (IDD) Project in Washington State is a component of a larger community partnership with Disability Rights Washington (DRW), Developmental Disabilities Council (DDC), and the Allies in Advocacy (collectively the AIDD network partners) focusing on the rights of parents with IDD. The purpose of the first UCEDD study was to examine Child Protective Services (CPS) investigations related to parenting with an intellectual and developmental disability (IDD) in Washington State. Using a mixed methods design, researchers attempted to document the prevalence of CPS investigations of parents with IDD at the birth of the child, the reasons given for the investigation, the supports available to the parents with IDD, and the current science in supporting parents with IDD. Following interviews with parents, Developmental Disabilities Administration case managers, a review of the national CPS data reporting, and an extensive literature review, a final report was completed. The report included both research and policy recommendations to address the lack of available information from state agencies on the experience of parents with IDD and CPS.
The second phase of the study investigated birth records of infants born to mothers with a diagnosis of IDD in Washington State over a 14-year period and linked those with Children’s Administration records to track the parental involvement with CPS. The findings were summarized in an article, Prevalence of Births and Interactions with Child Protective Services of Children Born to Mothers Diagnosed with An Intellectual and/or Developmental Disability, published in the Maternal and Child Health Journal. The collaboration related to parenting with IDD continues with the AIDD network partners and the Washington State Arc, as well as other researchers at the University of Washington, in order to improve our understanding of the prevalence and experience of parents with IDD and CPS in our state and ensure that they receive the supports they need to successfully parent. Findings from the first phase of research have been presented at local meetings and national conferences
UCEDD staff and faculty continue to participate in a state-wide focus group created pre-Covid, which also includes participation from individuals across the country. The focus of the group is to discuss potential legislative strategies and state agency efforts to improve support to parents with IDD and ensure that appropriate services are available. Although the last two years of Covid-19 have slowed down the activities of this group, the intent is to continue efforts to create systems change to protect the rights of parents with IDD.
Contact: Sharan Brown (sbrown@uw.edu)
Core Function: Professional Training, Technical Assistance and Outreach Training
The Self-Advocacy Project is focused on efforts to better support self-advocacy at the University of Washington UCEDD. Objectives for this project include program development and self-advocacy training. To support program development, staff has been involved in two activities. The first was to identify existing resources that support the development of the self-advocacy movement as well as educate the wider community on the self-advocacy movement. The identified electronic resources are available on the UCEDD website. The second major program development activity has been participation of UCEDD staff in the monthly meetings of the Allies in Advocacy State Team, a multi-year effort of self-advocates and the Administration on Intellectual and Developmental Disabilities (AIDD) network partners (Developmental Disabilities Council, Disability Rights Washington, and UCEDD). The Allies team wrote a Proclamation for the Dignity and Rights of all Human Beings that has been introduced at both the national and state legislative levels and will be used as a tool to measure increased independence and access to rights for individuals with intellectual/developmental disabilities. The AIDD network partners have committed to supporting Allies efforts to become a legislatively recognized fourth member of the network by including the Allies in Advocacy team in all collaborative efforts including support to the Equal Partners Interstate Congress (EPIC) project funded by the Administration on Community Living (ACL). Other recent examples have included the addition of advocates on the Department of Corrections project focused on the supports and services to incarcerated individuals with Traumatic Brain Injury in Washington State as Advisory Team members and presenting at the 50th Anniversary UCEDD Symposium in 2017. The Chair of the Allies group, who is also a UCEDD Consumer Advisory Council member, represented the UCEDD at the EPIC conference held in the summer of 2017. He also presented at the 2018 AUCD Annual Conference on the group’s efforts to become a nonprofit organization. The UCEDD support of the Allies efforts continues to be one of our priorities for the future as well as including them as partners in our grant activities as appropriate.
CHDD’s LEND program created a trainee position specifically for an advocate with IDD several years ago. The model for this new trainee position was developed with input from UW LEND faculty and staff and non-UW stakeholders to build on existing self-advocacy trainee models. The Advocate trainee position is an opportunity for individuals with IDD to develop their skills in supporting individuals with IDD in their communities as well as inform the LEND and other UCEDD faculty and students of their experiences and perspectives on research and service.
For additional information about services for Adults and Elders, please visit their website.
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