Tell it like it is: Sharing your child’s story

August 1, 2012 by cpehrson

No one knows a child better than a parent.  A parent knows his favorite toys, what he likes to eat, his favorite color, what makes him laugh.  A parent knows and loves him for the unique person that he is and the role that he has within their family.

Parents are asked to tell their child’s medical history over and over again, to different providers.  A parent knows many things that a doctor will never know about a child; things that would help him understand and work better with his patient.

It would be helpful if a parent could share that information with the doctor in a concise,  efficient way, similar to a resume.  This could be a great tool to hand to a doctor that could also include the child’s medical history and current treatment status.

The Centers for Disease Control and Prevention has developed just such a tool, simply called My Child’s Story. It’s short, it’s informative, and it’s helpful.

CDC recommends that when you are ready to create your own child’s story, remember to include this information:

  • name and birth date;
  • social history, including other family members and pets and where your child goes to school;
  • birth record;
  • medical history including any hospitalizations, contact information for all doctors, medications currently taking, allergies and reaction to any materials; and
  • information about who your child is, including his or her hobbies and favorite things.

You can view a fictional example of one child’s story online.

When you have your child’s story done, make copies and share them with everyone who has a hand in the medical care of your child.



Tags: ,

Utah disability history on display in education building

February 6, 2012 by JoLynne Lyon

An excerpt from the posters shows a protester in a wheelchair, in front of a bus

Catch the display in the Education Building Atrium through Friday, February 10.

It’s Education and Human Services Week. And while you’re enjoying the ice cream festivities over in the Education Building atrium, you can also learn more about disability history in Utah. (A complete schedule of events is listed on the college website.)

A series of posters on either end of the Atrium takes a Utah-specific view of significant events in disability history.

A look at Utah’s health history highlights includes pioneering female doctors and a Nobel prize laureate. Institutionalization of people with disabilities is examined. Parents reflect on their fight to have their children with disabilities attend public schools. One parent tells of her journey to participate in her son’s early education.  A veteran recalls a project to help the children of veterans exposed to Agent Orange. An advocate remembers the struggle for equal access to public transportation. People with disabilities reflect on the significance of being included in their communities.

So wander over between February 6 and February 10. It’s a great way to celebrate education, human services and making a difference.

Tags: , , , , , ,

Let’s Talk! about health care transition for young adults

September 2, 2011 by cpehrson

There is a great blog written by CPD’s Jeff Sheen about transition topics for youth with developmental disabilities.  The blog is sponsored by the New Community Opportunities Center, a training and technical assistance program of the Independent Living Research Utilization organization (ILRU).

The latest CIL Transition blog is about just that–young adults transitioning from pediatric health care to adult health care services.  Youth, and their parents, often have strong ties with their pediatric caregiver and are reluctant to transfer to another doctor when they are older.

Today’s Let’s Talk topic is addressing the benefits and challenges that come when youth need to transition to an adult health care provider.

What challenges did you face when you transitioned from pediatric to adult health care?

What benefits have you found by having an adult health care provider?

What advice would you give to a young adult and their parents who are needing to move to an adult health care provider?

We would love to have you share your experiences with our readers!

Ready, set, Let’s Talk!

Let us know of other topics that you would like to talk about on the Let’s Talk! blog.

Tags: , ,

Continuing to improve health care for children with special needs

September 1, 2011 by cpehrson

URLEND training session

The Utah Regional Leadership Education in Neurodevelopmental Disabilities (URLEND) program has been refunded for the next five years, announced Dr. Judith Holt, co-director of the program.

URLEND is one of the 43 LEND programs across the nation that the Health Resources and Services Administration (HRSA) awarded $28.3 million to for the improvement of the health of infants, children, adolescents and young adults with special health care needs.

LEND programs across the United States prepare trainees from a wide variety of professional disciplines to become leaders in the health care arena and develop interdisciplinary, family-friendly, integrated and culturally sensitive approaches to serving children with disabilities.

“The national competition is a tough one,” noted Dr. Holt.

As the URLEND enters its second decade of preparing competent health care leaders,  six new Lends are just beginning their journey.  The Utah Regional LEND has been funded since 2001 and is administered by the University of Utah’s Department of Pediatrics and the CPD.

This year there are a total of 31 new trainees participating in the URLEND training from the five states of ID, MT, ND, WY, and UT.

Since 2002, the Wyoming Institute for Disabilities (WIND), located at the University of Wyoming, has participated in the URLEND program, providing over 13 trainees through the years.

“Participation in URLEND provides our students with experience in interdisciplinary health care settings that serve children with special health care needs and their families.  Given our small population and the lack of an academic medical center, there are limited opportunities for Wyoming students to obtain clinical experience…” states William MacLean, Jr., URLEND Wyoming Distance Coordinator.

URLEND also provides a strong family-parent perspective and provides exposure to outstanding program faculty and a broad curriculum on topics relevant to neurodevelopmental disabilities.  “The focus on leadership education is vital to building infrastructure for our state,” MacLean summarizes.

Idaho students have also taken advantage of the URLEND’s focus on multidisciplinary services for children with special health care needs.  Since 2005 there have been ten URLEND trainees.

These trainees have “increased their knowledge and skills in working with diverse cultures and had opportunities to see how the medical home model can be of great benefit for children with disabilities, their families, as well as their health care team,” says URLEND Idaho Distance Coordinator, Gwen Mitchell.

For these Idaho trainees, “URLEND has provided connections and resources for service
care that extends beyond state lines. Living in a rural setting, URLEND has opened the door to many opportunities for service care for the people in Idaho that we may not have had without LEND training,” Mitchell continues.

URLEND faculty look forward to five more years of doing their part to shape future leaders in health care and to improve health care for children and families.

Tags: , ,

High school youth get hands-on experiences at USU

June 30, 2011 by cpehrson

A group of high school students visited the USU campus this week and “had a blast!”

This was the observation of the group’s leader, Kristy Jones, who directs the Health Careers Opportunities Program (HCOP) at Weber State University in Ogden, Utah.

HCOP is a year-round program for high school students in the Ogden area that helps students from a variety of backgrounds prepare for college and eventually a career in medicine or health.  The students learn about different health-care careers, get hands-on learning opportunities, like doing dissections, and go on field trips to local health-care programs. In the process, they find out just how rewarding—and fun—college can be.

This is all done in the hopes that the students will choose a career in the health care field and continue on to get a college education.

The students who visited USU are part of the HCOP Summer Program, a competitive program that gives 30 students the opportunity to come to WSU for six weeks where they’ll learn even more about health-care careers, participate in classes and labs, go on field trips, like this one, and even earn minimum wage for the time spent in class.

While on the USU campus, the students visited the Communications Disorder and Deaf Education Department and observed hearing and hearing aid testing, and were given a tour of the department by URLEND faculty member, Vicki Simonsmeir.  They heard about the latest research on nutrition from registered dietician, Kelsey Rich, a member of the IDASL class at the CPD.  The highlight was their visit to CPD’s Utah Assistive Technology Lab, where  they learned about assistive technology apps for electronic devices, and got to help build slant chairs for supported seating.

The visit to USU came about as a result of a longstanding partnership between HCOP and the CPD’s Interdisciplinary Training Division directed by Dr. Judith Holt.



Tags: , , , , ,