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December 2012

 Respite
Holiday PictureWith the holidays in full swing, many families have increasingly hectic schedules.  For caregivers that often means added stress.  Taking time to recoup and regroup is essential. 

 

Dani Ohlman, the MMI Family Trainee,

is the mother of four children ages 13 ,11, 4 and 2. Her son, Logan, now 11, was diagnosed with meningitis shortly after birth that resulted in an intellectual disability, the need for a feeding tube and other health impairments. Dani shares  that respite is life-saving.  "Having a break allowed me to be refreshed and be a better parent. I was calmer and more patient with my children. There were days when I was a single mom when I would cry because I felt like I was a prisoner in my own home. I felt so isolated and disconnected when Logan was younger because I could not do the 'normal' things that other families were able to do because of Logan's behavior. Logan could not sit still and did not have acceptable social skills. Often I found myself feeling guilty for having these feelings because my son had little control over what had happened to him. It was his medical condition that often caused his behavior and his lack of understanding of what was socially appropriate. Now, because I am remarried and have other children, respite provides an opportunity for me to occasionally do things with my other children without having to worry about needing to know the location for the nearest hospital because my son is prone to seizures."

 

Another mom shares,"Having respite is like having the cavalry come in.  It gives caregivers that needed break to refresh and recharge themselves to continue to provide the best possible care to their loved ones.  Even Mary Poppins took a break."

 

The Nebraska Lifespan Respite Program is charged with identifying respite providers and also provides a $125 monthly subsidy that supports caregivers to take a break.  Caregivers also have the flexibility to identify and hire their own provider. It is available to families that are caring for individuals across the lifespan and offers a lot of flexibility in income eligibility.  For more information and an application go to Lifespan Respite.

Nebraska's New Online Handicap Placardhandicap parking
Nebraska's Division of Motor Vehicles (DMV) has implemented a new electronic permit processing system for obtaining a handicapped parking sticker.  The new process allows individuals to meet directly with an authorized medical provider who has been given access to the online application.  Once the physician enters the data, it is electronically processed to the DMV for review.  Upon receipt, applications are reviewed and stickers are printed and sent to applicants.  The new process has shaved approximately two-weeks off of the application process and saves both the applicant and the prescribing physician multiple steps.  For more information regarding this recent change to DMV's handicapped application process, please visit here. Otherwise, visit Nebraska's DMV website for specifics on handicapped parking permits.
 The CCRPDonvention for the Rights of People with Disabilities (CRPD)
This past Tuesday the United States Senate had the opportunity to pass the United Nations disability rights treaty based upon the Americans with Disabilities Act, the Convention for the Rights of People with Disabilities. Unfortunately, it did not pass by just five votes. It had bi-partisan support of both Republicans and Democrats such as John McCain and John Kerry, support of disability advocates across the world, and had already been ratified by at least 125 other countries.  Former Republican Senator Bob Dole, a veteran wounded and as a result disabled in combat, was a huge proponent of the treaty. The treaty called for the inclusion and humane treatment of people with disabilities in mainstream society.  Adoption of the treaty would have had no effect on the budget or current laws in the U.S. It however, would have protected the rights of Americans with disabilities traveling outside the U.S. as well as positioned the U.S. as the leader in disability rights.  The lack of passage has gained national attention by many who feel that this treaty's lack of passage further reiterates the viewpoint that our current Congress has been unable to move even the most basic legislation forward.  Senator Tom Harkin, a known disability advocate, has said that he will most likely re-introduce the treaty in January.  For more information go the United States International Council on Disabilities website. (http://www.usicd.org/template/index.cfm)
Special Event with Santa at Shadow Lake
Santa is having a special sensory-friendly event for families that have children with special needs.  While this event is not sponsored by the Munroe-Meyer Institute, many families may find this a fun holiday activity.  For more information, click here.
For Help Navigating Systems and Information: 

 Contact our family support coordinators:

 

Mark Smith

402-559-5744 or

[email protected]

 

Sarah Swanson

Sarah Swanson

402-559-4573 or

[email protected]

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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