Sachin Pavithran is Utah’s National Federation of the Blind legislative coordinator and an assistive technology specialist with the Center for Persons with Disabilities. He was in the news recently when he and Utah NFB President Ron Gardner presented US Senator Bob Bennett with the Louis Braille Bicentennial Silver Dollar; a coin that Bennett championed. Sales of the collectors’ item will help fund Braille awareness programs. To view a news clip, click on the image on the left.

This video appears with permission from Fox 13 News in Salt Lake City, Utah at www.fox13now.com.

The Association of University Centers on Disabilities (AUCD) is working with other disability organizations to ensure that long-term services and supports are included in health care reform.  One important bill they are advocating for is the Community Choice Act (CCA) that would offer choice and independence for people with disabilities.  This legislation, sponsored by Senator Tom Harkins (D-IA), will bring people with disabilities into the mainstream of society and provide equal opportunity for employment and full involvement in community activities.   It allows people with disabilities who need an institutional level of care the choice of receiving their services and supports in their own communities, rather than in an institution.

“The legislation sends a message to the rest of Congress and to America:  We want real homes, not nursing homes,” said Harkin, one of the authors of the Americans with Disabilities Act (ADA).  “Our current system effectively forces people into institutions and requires them to impoverish themselves in order to become eligible for the assistance they need.  It is wrong – and this legislation changes it.

Senator Harkin’s office has asked for assistance.  They need personal stories that can help make the case of why long-term services and the Community Choice Act should be included in health care reform.  They especially would like stories from the developmental disabilities community.  In writing your story, you may want to consider the following questions:

•    Are you caring for a family member or family members who need long-term services?
•    Are you an aging caregiver concerned about future services?
•    Do you have out-of-pocket expenses for long-term services that are difficult for your family?
•    Has providing care impacted your employment?
•    Are you on a waiting list for Medicaid home and community-based long-term services?
•    How long have you been waiting?  How long is the waiting list?
•    Have you ever had to move or become improvished to get the long-term services you need?
•    Have you only had a choice of nursing home or institutional placement?

There is no set format for the stories, but short, one-page stories are most effective with lots of details included.  Be sure to include your name and what state you live in.  Your story should make the case of why long-term services and the CCA should be part of health care reform.

Health care reform is moving very quickly, so the stories are needed as soon as possible.  You can send them to Joe Caldwell at jcaldwell@aucd.org, or mail them to:  Joe Caldwell, Association of University Centers on Disabilities, 1010 Wayne Avenue, Suite 920, Silver Spring, MD 20910.

Across the nation, 1.4 million Americans suffered a traumatic brain injury (TBI) from motor vehicle crashes, falls, sports, and abuse/assault. TBI is the leading cause of death and disability in children and adolescents in the U.S.  The Center for Disease Control (CDC) reports that in Utah, there are 44,000 Utah men and women living with disabilities stemming from severe head injuries. TBI is the leading cause of death for people between the ages of one and forty-four. 

Also, a growing number of veterans are coming back from the conflicts in Iraq and Afghanistan with head injuries. Advocates estimate roughly two-thirds of the more than 30,000 men and women injured in the war so far have TBI, and it is the signature injury of the war.

TBI is an injury that is not well understood. Depending on the severity, it may go undetected for years, and can be easily misdiagnosed. No two brain injuries are the same even if the injury occurs in the same location of the brain. Individuals who have sustained a brain injury and their family members often find themselves lost in a maze of confusion, not knowing what to expect, where to locate information, and how to obtain professional services that meet their unique needs.

The Cache and Box Elder Traumatic Brain Injury Partnership Programs, part of the Utah TBI Partnership Project at the CPD,  hosted the Northern Utah TBI Mental Health Provider Conference in March, 2009. This conference was designed to educate and inform mental health providers, individuals who have sustained a brain injury, family members, community members, or  other individuals having an interest in learning more about brain injury.

Four sessions were offered on the following topics: TBI Mental Health Provider Foundational Training, Functional TBI Assessments for People with Brain Injury, TBI Mental Health Provider Tools and Treatment Options, and Pharmacology and TBI for Mental Health Providers.

TBI resources and information are available on several excellent websites.  A listing of these websites are  available on the CPD website.  For more information, please contact Sue Dubois at  (435)797-8810.

April is National Child Abuse Prevention Month. It is a time to raise awareness about child abuse and neglect and encourage individuals and communities to actively support children and families.

The number of Utah’s children identified as victims of abuse and neglect by the Utah Division of Child and Family Services in 2008 were 8,284.  Children between the ages of 0-5 years comprised 42 percent of all supported victims. Domestic violence is the most frequently supported allegation, at 32 percent. Sexual abuse is the second most supported allegation at 24 percent. Those statistics only reflect the abuse that is reported and investigated.  There are many other children who are the silent victims.  Who are still out there being abused.

The causes of child abuse and neglect are numerous and complex. All families want to raise safe, healthy, successful children.  Most of us cannot imagine what would make an adult abuse a child. Sadly, every day, across our country, the very people children rely on for protection and comfort subject them to abuse or neglect.

All types of child abuse and neglect leave lasting scars. Some of these scars might be physical, but emotional scarring has long lasting effects throughout life, damaging a child’s sense of self and ability to have healthy relationships.

You can make a difference. You may be reluctant to interfere in someone’s family, but you could be the only one that can stop the abuse.  The earlier abused children get help, the greater chance they have to heal from their abuse and not perpetuate the cycle.

Here are some suggestions of what we can do to reduce and prevent child abuse:

First of all, we need to know the signs of abuse and neglect when we see  them.  And then, we need to know where to go to report it so it can be stopped.  In Utah, the Child and Family Services Intake Hotline number for reporting child abuse is 1-800-678-9399.  All calls are kept confidential and can be done anonymously, if desired.

Next, and just as important, is prevention. The best way to prevent child abuse and neglect is to educate parents in successful, positive parenting skills and to help strengthen families. In Utah, Healthy Families Utah and Safe Families Utah both offer in-home parenting education to first-time parents, parents with older children, and  at-risk parents. Each community also offers parenting classes through a variety of organizations.

Together, we can make a difference, as we envision a place where all children are protected and safe.

Eric Monson presented the poster at the Institute of Biological Engineering conference.

Two students who work in the Center for Persons with Disabilities’ Biomedical Lab were honored in March when they placed in the undergraduate poster competition at the annual Institute of Biological Engineering conference in Santa Clara, California.

Eric Monson and Andrew Vanderwerf collaborated on the poster, which describes the use of a flourescent dye to determine how many copies of the C4A and C4B gene are present in a DNA sample. Monson presented the poster at the conference, where it won third place.

The green dye process is related to their continued work to find an affordable way to test DNA in specialized applications, including disease research. Their goal is to more equally reproduce human DNA for experiments, leading to a better understanding of genetic diseases. Though the dye process can be applied to any gene, it was developed with autism research in mind. The two students received an Undergraduate Research and Creative Opportunities grant from Utah State University to fund their work in 2008.

The students are both seniors who work in the biomedical lab under the direction of Dr. Anthony Torres.