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October  2012

The Power of One katie and Julie
To say that the life of Katie Beckett made an impact, is a significant understatement. Julie Beckett, Katie's mom was motivated to make change when she could not bring her ventilator-dependent infant daughter home from a nursing home because doing so would make her ineligible for Medicaid services.  (The family had already met their lifetime annual insurance cap for Katie.)  Through Julie's advocacy efforts, a new type of funding vehicle was created allowing individuals to receive services in their homes with Medicaid funds: a waiver.  This past summer, Katie passed away. Her life and her families' advocacy efforts helped pave the way for the delivery of home and community based services to hundreds of thousands of Americans. (Thank you Julie and Katie!)     To learn more about their story, click: here
Senator Grassely
Click on picture to hear Senator Grassely pay tribute to the life of Katie Beckett

Click on the link below to find additional information about waivers and a list of the different waivers that are offered.                                 

Training Opportunities ARC
Family Support Programs:  The ARC of Nebraska recently received a grant from the Nebraska Developmental Disabilities Planning Council; staff from the Munroe-Meyer Institute will be assisting with this project.  The project involves reviewing Nebraska statutes, regulations and programs to evaluate the level of family support available for families that have members with disabilities.   Advisory meetings in Lincoln, Kearney, North Platte, Scottsbluff, Omaha and Columbus will be held with families to obtain information regarding the barriers that they encounter.  At the end of the grant, a report will be generated with specific recommendations for change.   If you would be interested in assisting, or would like updates on this project, please fill out the following survey at your first opportunity:  



EDN Babies

The Early Development Network Parent Training: 
The Munroe-Meyer Institute has received a grant to provide training to parents who have children receiving services or have received services from the Early Development Network (EDN).  By state statue, local Planning Region Teams (PRTs) that oversee EDN services are required to have 20% parent participation.  This training is intended to enhance parents/caregivers' abilities to offer their expertise to their local PRT.  For specific information on this training go to our homepage under "Calendar." For additional information about Nebraska's Early Development Network click here. 
To register for this training, click on the button below.


Camp Munroecamp munroe swings
For over 30 years at Camp Munroe, children with developmental disabilities have been partnered with peer mentors and engaged in fun activities and social outings.   While parents and self-advocates speak highly of the program, see what volunteers have to say about the program by viewing the video below.        
UNMC Camp Munroe
UNMC Camp Munroe
For Help Navigating Systems and Information: 

Contact our Community and Family Resource Coordinators:


Mark Smith

402-559-5744 or


Sarah Swanson

Sarah Swanson

402-559-4573 or


The Munroe-Meyer Institute is a University Center of Excellence committed to unlocking the potential of children and adults with developmental disabilities and genetic disorders through exceptional patient care, education and research.  
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