•  
  •  
 

Abstract

Individuals with intellectual and developmental disabilities and their families need access to timely, quality information and assistance about relevant services and supports. Despite statewide systems of information and assistance for this population, there is a need for “in-the-moment” assistance for individuals and family members who participate in on-site research, training and or service delivery at the Waisman Center. The aim of this quality improvement project was to clarify the role of an internal Resource Center so as to align with the staff resources available and not duplicate statewide systems of support.

The Waisman Center at the University of Wisconsin-Madison the University Center for Excellence in Developmental Disabilities (UCEDDS) is co-located with a Leadership and Education in Neurodevelopmental and Related Disorders (LEND) training program and an Intellectual and Developmental Disability Research Center (IDDRC), representing a unique opportunity for collaboration. The current quality improvement project utilized a Delphi methodology to clarify the role of an internal Resource Center. Stakeholders who participated in the study were mostly female (81%) and represented clinical (14%), outreach (24%), administrative (33%), research (38%), self-advocate/individuals with disabilities (5%), and parents/family members of individuals disabilities (19%). Through the Delphi process, final priorities and future recommendations for the Waisman Resource Center were identified. This work has applications at other UCEDDs who aim to provide additional support to individuals and families, particularly in partnership with LENDs and IDDRCs.

Plain Language Summary

Individuals with intellectual and developmental disabilities and their families need help finding information. They also and help finding relevant services and supports. There are state systems of information and help for this population. The Waisman Center is the University Center for Excellence in Developmental Disabilities (UCEDD) in Wisconsin. It is located at the University of Wisconsin-Madison. The Wisconsin Leadership and Education in Neurodevelopmental and Related Disorders (LEND) training program is also located at the Waisman Center. An Intellectual and Developmental Disability Research Center (IDDRC) is also located here. This represents a unique opportunity for collaboration.

The Waisman Center connects with many individuals with disabilities and their families. They are involved in research, training, and clinical service delivery. There is a need for “in-the-moment” help for these individuals and family members. The aim of this quality improvement (QI) project was to clarify the role of the Resource Center at the Waisman Center. It should align with, and not duplicate, available state resources and support.

The quality improvement project utilized a Delphi method. Stakeholders who participated in the study were mostly female (81%). They represented clinical, outreach, administrative, and research faculty and staff. They also represented self-advocates, and parents/family members of individuals with disabilities. Through this process, we identified priorities and recommendations for the Waisman Resource Center. This has applications at other UCEDDs that aim to provide support to individuals and families. In particular, this may be relevant to QI work in partnership with LENDs and IDDRCs.

Creative Commons License

Creative Commons Attribution-Noncommercial 4.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 4.0 License.

Download

Share

COinS
 
 

To view the content in your browser, please download Adobe Reader or, alternately,
you may Download the file to your hard drive.

NOTE: The latest versions of Adobe Reader do not support viewing PDF files within Firefox on Mac OS and if you are using a modern (Intel) Mac, there is no official plugin for viewing PDF files within the browser window.