MMI Monthly 

The electronic newsletter of the Munroe-Meyer Institute at the University of Nebraska Medical Center
Dec. 11, 2016
A message from the associate director:
                            
With Thanksgiving just behind us and the rest of the holiday season still ahead, it seems an appropriate time to reflect on the past year and the many reasons that we, as part of the Munroe-Meyer Institute, have to be thankful.

It's been a year of transition for MMI, but some things remain constant. For one, we can be thankful for our wonderful clients and their families. At MMI, the kiddos and adults we help are more than "clients," of course -- they are part of the MMI family. The holidays are always a good time to let your family know that you care about them.

We can also be thankful for our community, both the boards that offer financial assistance and the other organizations that offer partnership and collaboration. As we move forward into the New Year, MMI will continue to work to become an even stronger voice and resource for the intellectual and developmental disability community in Nebraska. We will accomplish this hand in hand with these supporters and partners -- because we know they care just as much as we do.

Wayne Stuberg, Ph.D.
Associate Director, Munroe-Meyer Institute
From left, MMI Director Karoly Mirnics, M.D., Ph.D., and Keith Allen, Ph.D., director of psychology, speak at a radio station in Hastings as part of a trip to central Nebraska in November.

Tri-city trip by MMI leadership draws media interest

On Nov.  9 and 10, members of MMI's leadership team traveled to the cities of Hastings, Grand Island and Kearney on a listening tour. To see coverage of their trip in the Grand Island Independent, click here.    To listen to radio coverage from KRGI Grand Island, click here. 
MMI staffer JaMese Sullivan nominated a family to receive holiday gift cards.
Holiday gift cards make a difference for MMI families

The Hattie B. Munroe Foundation funded $150 gift cards for 56 MMI client families this holiday season, dispersing a total of $8,400.
 
Nominations for client families were solicited by the MMI Board of Directors from MMI staff members from all departments. Families nominated by staff from physical therapy, occupational therapy, psychology, speech, pediatric  feeding disorders, severe behavior, early intervention, developmental medicine, the patient information office and administration received cards. These families live throughout the state and the Omaha metro area, including Omaha, La Vista, Bellevue, Council Bluffs, Lincoln, Hastings, Kearney, Fremont, Columbus, Table Rock and Niobrara.
 
"This is an important annual event, both for MMI families and the MMI staff members who serve them," said Kim Bainbridge, who coordinated the program. "We are grateful, as always, to the board for coordinating and the Hattie B. Munroe Foundation for funding this effort. Families of individuals with special needs can face unique financial challenges, and this program helps make the holiday season a happier one for these MMI families."
 
The gift cards will be delivered by the families' nominating providers or by mail.
 
"Caring for individuals with intellectual and developmental disabilities and their families is the reason we are all at MMI," said Karoly Mirnics, M.D., Ph.D., director of MMI. "The generosity of the Hattie B. Munroe Foundation lets our staff extend a different kind of helping hand during the holidays, and we are grateful to them for providing this opportunity year after year."

From left, Amberly Connolly, Clarkson College; Jill Kagan, executive director of the ARCH National Respite Resource Center; Ellen Bennett, MMI respite coordinator; Sherri Blome, western respite network coordinator; Sarah Swanson, MMI family support and outreach coordinator; Jolene Johnson, Ph.D., MMI program evaluation; Sharon Johnson, Nebraska DHHS respite coordinator.

MMI representatives attend National Respite Conference

Faculty and staff from MMI recently attended the National Respite Conference in Denver to present on projects designed to increase access to respite and evaluate the impact of respite for family caregivers.
 
Projects included collaborations with Nebraska Department of Health and Human Services (DHHS) staff, faculty from Clarkson College and respite coordinators across the state to improve access to respite/or allow family caregivers to get a break. 
 
Also, conference attendees  evaluated respite in Nebraska programs and  built awareness of respite for UNMC and Nebraska Medicine employees, thereby increasing the number of respite providers.
 
November was Caregiver Awareness Month, and 2016 marks the 10th anniversary of the federal Respite Act. This act appropriates funding to states and was based on Nebraska's Respite Program. 
The Munroe-Meyer Institute is both a federally designated University Center for Excellence in Developmental Disabilities and a Leadership Education in Neurodevelopmental and Related Disabilities program.

MMI by the numbers

As the year winds down, here's a list of fast facts about the Munroe-Meyer Institute:
 
Organization
  • MMI has 14 departments with approximately 500 employees.
  • It is a federally designated University Center for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD).
  • It is a federally designated Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program.
  • MMI is supported by five philanthropic boards:
    • MMI Operating Board
    • Hattie B Munroe Foundation
    • Meyer Foundation for Disabilities
    • Munroe-Meyer Guild
    • Scottish Rite
  • MMI has an annual budget greater than $37 million, with more than $8 million annually in federal, state grants and contracts, and more than $2 million annually in philanthropy.
Clinical services
  • MMI provides more than 70,000 services annually, 75 percent of which take place away from the MMI building, out in the community.
  • We have 40 provider locations across the state, with more than 30 outside of Omaha.
  • MMI provides more than 50 types of services.
Education and research activities
  • MMI is involved in education of medical students, residents, fellows, interns, allied health professionals, Ph.D. and M.S. students, college and high school students.
  • There are more than 11,000 participants in workshops, conferences, teleconferences and other community education activities.
  • MMI has 107 long-term trainees (doctoral, masters, interns).
  • More than 3,600 long term students received training at MMI in the last 17 years.
  • MMI has students from more than 40 universities and colleges nationwide
  • There are more than 40 faculty involved in basic, clinical and translational research.
  • More than 150 clinical and research fellows were trained at MMI in the last 15 years.
From left, Christian Moore, Kelley Coutts, Grant Johnson and Nate Kotila. Moore handed out holiday hats to his fellow party-goers.

Rec Therapy holiday party a smashing success

Nate Kotila goes for a spin while MMI staff member Nick Clark looks on.
The MMI recreation therapy department's Arnold Stern Holiday Party was held Dec. 4 at the V Bowling Alley near Oak View Mall. 

Rec therapy staff members and volunteers joined clients for an evening of bowling, arcade games and laser tag. 

Arnold Stern is the recreational therapy department's teen inclusion program, and the holiday party is an annual event.

The party location is chosen by an interest survey annually, with 17 client participants and eight staff members to act as buddies as clients bowled, played laser tag and arcade games. 
From left, UCEDD Director Wayne Stuberg, Ph.D., Kim Falk, Sarah Swanson, Rachel Ray, Tara Harper and Mark Smith.

MMI UCEDD members present work at conference

Members of Munroe-Meyer Institute's University Center for Excellence in Developmental Disorders (UCEDD) recently presented their work at the 2016 Association of University Centers on Disabilities Conference in Washington, D.C.

Posters and presentations included:  
  • Wayne Stuberg, Ph.D., UCEDD director: "UCEDD Round Table Discussion on Collaboration with Centers for Independent Living." 
  • Mark Smith, UCEDD assistant professor: "Fabric Not Fringe: Weaving Family Involvement Strategies into LEND's and Other Professional Disability Related Training Programs" and "Nothing About Us Without Us: Increasing Leadership Opportunities for People with Disabilities."
  • Sarah Swanson, consumer family coordinator: Poster, "Integrating Disability into Public Health; Parents Resource Coordinators are Community Health Workers."
  • Kimberly Falk, respite employer engagement coordinator (with Swanson): Respite Concurrent, "Respite: An Upstream Approach to Keeping Individuals in Their Homes and Supporting Family Caregivers" 
  • Tara Harper, UCEDD program associate: Poster, "Implementing a Transition Model with Adults, UNMC/Nebraska Medicine's Project Search Impact on Competitive Employment for Adults with Disabilities" 
  • Rachel Ray, UCEDD program associate:  Poster, "Overcoming Educational and Health Disparities for African American Children with Autism: How Parent Resource Coordinators Connect Families to Services."
News in brief
 
Raven Lance, left, and friends.

Nursing student donates holiday gifts to MMI
Raven Lance, a B.S.N. student at Clarkson College who is completing her practicum hours at MMI, recently decided to join with her family to donate a collection of games and toys to the MMI recreational therapy program. A donation to a deserving organization will become an annual event for her family, Lance said, adding that MMI was the perfect choice for the family's inaugural gift. The presents, which included board games, DVDs and other items, will be used by MMI rec therapy clients. 

Retirement party set for Renee Fordyce-Boyer
Renee Fordyce-Boyer  has announced she will retire in January 2017 after a 41-year long career with the Human Genetics Laboratory. All are invited to a celebration of her career, to be held in HBM 3046 on Jan. 4 from 3 p.m. to 4:30 p.m.

UNMC/Munroe-Meyer Institute now part of the State Independent Living Network
On Oct. 1, the federal Administration for Community Living approved MMI as the designated state entity (DSE) for Nebraska's federal Part B independent living funding. This approval makes MMI the first UCEDD to assume this role. 

MMI will now be the fiduciary partner to the Nebraska Statewide Independent Living Council (SILC) and other independent living partners, as outlined in Nebraska's 2016-2019 State Plan for Independent Living (SPIL).  MMI also now participates as a non-voting member of the Nebraska SILC and will work to help create and approve future SPILs. Previously, this role was provided by Nebraska Vocational Rehabilitation and the Commission for the Blind and Visually Impaired.  

This change was agreed upon by all IL partners and was made possible by changes allowed under the federal Workforce Innovation and Opportunity Act .

For more information contact Wayne Stuberg, Ph.D., or Sarah Swanson.


Dr. Ellis named director of academic affairs at MMI
MMI Director Karoly Mirnics, M.D., Ph.D., announced in November that Cindy Ellis, M.D.,  will assume the role of director of academic affairs at MMI. "She is a tireless worker, dedicated to education, diversity and faculty development," said Dr. Mirnics. "I have been working with her very closely over the last several months, and it became clear to me that she is the perfect person for this position."

MMI aids in public launch of Seizure Log Android mobile app
Families dealing with seizures now have access to a new mobile application to help them better manage their health condition. Called a Seizure Log, the Android application was developed collaboratively by the Munroe-Meyer Institute, LIFE, Seizure Tracker, and Element 84. The new mobile application, SeizureTracker.com, has the same management tools as its online site. Users can log and videotape seizures, record medication administrations, record VNS usages, file and store data in the Seizure Library, sync events with their SeizureTracker.com account. They also can graph synchronized events through the Seizure Tracker system. Logging seizures and keeping good records is an essential skill for managing epilepsy. The free app can be downloaded at the Google Play Store or iTunes.

Tara Harper, program associate for University Centers for Excellence in Developmental Disabilities, assisted with grant writing, project coordination, and app testing. The collaborating organizations on this project are in the process of developing a toolkit of mobile apps to replicate the LIFE Toolkit currently available on the LIFE website and in paper format. 

Shorts
  • Jennifer Sanmann, Ph.D., has been named the interim director of the Human Genetics Lab.
  • Hope Chipman, genetic counselor (and previously a counselor with MMI's genetic medicine department) and Whitney Conley, clinical authorization representative, joined the Human Genetics Lab.
  • Evan Roberts and Karissa Scott of the Human Genetics Lab successfully passed exams to become certified technologists in molecular biology through the American Society for Clinical Pathology (ASCP).
  • Corinn Grabow of the Human Genetics Lab successfully passed the exam to become a certified technologist in cytogenetics through the American Society for Clinical Pathology (ASCP).
Upcoming Events
 
Upcoming events of interest to the MMI community:

Volunteers and participants are still being accepted for the MMI Recreation Therapy Department's Winter Camp, to be held Dec. 28-30 and Jan. 2-3. For more infomation on the camp, or to inquire about attending or volunteering, contact Nicole Giron at 402-559-3018.

The inaugural performance of MMI's Theater Arts Camp will be held at 6:30 p.m. Jan. 6. The performance will be the culmination of the camp held by the MMI Recreation Therapy Department. (Volunteers also are still being accepted to help with the camp, from 9 a.m. to 4 p.m. Jan. 4-6.) For more information, contact Nicole Giron at 402-559-3018.

A Special Needs Community Resource Fair will be held from 2:30-6:30 p.m. Jan. 6 on the lower level of the Educational Service Unit No. 3 at 6949 S. 110th St., La Vista. The event is free and open to the public, and it will feature speakers, representatives from community agencies, and free kids' activities, food and giveaways. Speaker topics include transitioning from IFSP to IEP; improving academics, behavior and social skills; children's respite and other areas of interest.

The date for the Meyer Foundation for Disabilities' 2017 Walk and Roll for Disabilities has been set: March 5. The event will be held at the Oak View Mall, 3001 S. 144th St. The event's Facebook Page is already up, and organizers hope to get to 500 likes. Visit the page here and like it! Then start planning your teams! Funds raised at the event go to support programming at MMI.

Links of the month
 
News from around the Internet of interest to the MMI community.

Dr. Ellis, Dave Pantos discuss vaccination misinformation
MMI's Cindy Ellis, M.D., joined Dave Pantos of the Autism Action Partnership on KETV Nov. 13 to discuss misinformation regarding vaccinations and autism. To see the interview, click here. 

Evaluating Nebraska's long-term care delivery system
The Nebraska Department of Health and Human Services recently contracted with Mercer Health Benefits Inc., an independent government consulting firm, to evaluate Nebraska's long-term care delivery system. Long-term care also includes the systems that support individuals with intellectual and developmental disabilities and their families. The stakeholder report is now available here.

Previously, the Nebraska DHHS authored a concept paper which provides a good overview of why they are looking to redesign Nebraska's current system and also asks for feedback on the redesign efforts. 

Subscribe for more DHHS updates on these efforts here.

Nebraska Assistive Technology Partnership premieres new logo, website
The Nebraska Assistive Technology Partnership has rebuilt its website. Director Tobias Orr said in a holiday message that the partnership also will premiere a new logo and tag line, " Technology with a  Purpose," in 2017. For more information on the new logo and the partnership's other services and resources, please visit the website. 


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