AUCD representatives Daniel Bier, David Mank and Dawn Rudolph with CPD Director Bryce Fifield.

Colleagues from university centers like the CPD and the Association of University Centers on Disabilities visited us at Utah State University this month. As part of a technical assistance site visit, they offered some insights on the future of the disability field, especially as it relates to the CPD’s work.

The disability field may change as baby boomers age, said Dr. David Mank of the Indiana Institute on Disability and Community. “How will that affect even the definition of disability, and how society responds to it?” he asked. For example, a retired couple may build their new home all on one level to spare their knees, but they may not ever mention words like “universal design” or “disability.”

Daniel Bier is the associate director of the Waisman Center at the University of Wisconsin ad Madison. He said international connections will probably become more and more important in the future, and that university centers are well poised to collaborate with people from other countries on disability issues.

For example, more than 50 countries from China to Argentina to Rawanda have ratified a UN Convention on disability rights. Now they will be seeking technical assistance to put its principles in place.

“UCEDDs are in the best position to facilitate that discussion and create the agenda,” Bier said.

Other issues stem from the current economic crisis and the budget cuts that came with it. Around the country, the staff people who provide services like supported employment will be reduced and people within the disability field will struggle with what “inclusion” really means. “That discussion has to play out,” said Bier. The important thing is that university centers do not back away from their commitment to inclusion.

Whatever the challenge, the Center for Persons with Disabilities should not feel alone, said Kathryn Cargill-Willis, who spoke by telephone to the visitors and people from the CPD. Cargill-Willis is the Program Specialist for the federal Administration on Developmental Disabilities.

Every university center for excellence on developmental disabilities faces the same issues, she said.

The site visit was requested by CPD Director Bryce Fifield. It allowed people within the center to discuss their goals and the best ways to achieve them.

The Special Needs Registry (SNR) has been developed for individuals that may require special assistance from emergency services personnel during a disaster or other emergency.

Registration is as easy as 1-2-3-4 online…
1. Go to the SNR website  at http://www.specialneedsutah.org
2. Fill in the requested special needs information
3. Submit your information online
4. Update your information on an annual basis

Or as easy as dialing 2-1-1
Dial 2-1-1 to speak with a Special Needs Representative.

Information that you may be asked to provide includes:
Life sustaining medication
Vision, hearing, and/or speech impairments
Supplemental oxygen
Life-sustaining equipment
Mobility and/or homecare assistance
Service animal
Help family and friends register

If you have a client, neighbor, friend, or family member that may require special assistance in time of an emergency, please share this information with them and offer to assist them in entering the appropriate information.

The Registry has been created as a supplement to an overall personal emergency preparedness plan.  You should have personal equipment and supplies to last a minimum of 72 hours in the event of an emergency.  Registration with the Special Needs Registry does not guarantee emergency services.

Do you know all the ways you should measure your child’s growth? We naturally think of height and weight, but from birth to 5 years, your child should reach milestones in how he plays, learns, speaks and acts. A delay in any of these areas could be a sign of a developmental problem. The good news is, the earlier it’s recognized the more you can do to help your child reach her full potential.

The Center for Disease Control (CDC) website offers interactive tools to help you watch for and record your child’s  developmental milestones.  The website also offers a video in its “Health Matters” series called “Baby Steps: Learn the Signs. Act Early,” which provides up-to-date information and guidance on identifying developmental disabilities.

If you suspect a problem with your child’s development, there are several things you can do.  Talk with your child’s doctor.  If you or your doctor think there could be a problem, ask for a referral to see a developmental pediatrician or other specialist, and contact your local early intervention agency (for children under 3) or public school (for children 3 and older) to find out if your child qualifies for intervention services. To find out who to speak to in your area, you can contact the National Dissemination Center for Children with Disabilities by logging on to www.nichcy.org or calling 1-800-695-0285. In addition, the CDC has links to information for families on their Autism Information Center page.

The Center for Persons with Disabilities houses the Early Intervention program Up to 3, a program that serves children under 3 years of age  who have delays or disabilities in the Cache, Rich, and Box Elder counties in Utah.

Words are powerful. Mark Twain said, “The difference between the right word and the almost right word is the difference between lightning and the lightning bug.” This is especially true when we are talking about people with disabilities.

The wrong word has the power to hurt, devalue, and stereotype a person. These are words like “disabled,” “handicapped,” “crippled,” “special needs,” and “retarded.” Many words become labels that carry a negative connotation or are misleading. Using labels contributes to negative stereotypes and invoke pity, fear, or disgust.

The right word has the power to build up, show respect, and give dignity. The right words focus on the person, not the differences. People with disabilities are moms and dads, sons and daughters, friends and neighbors, students and teachers, scientists, reporters, doctors, actors, presidents, and more. Most importantly, they are people first.

In choosing words about people with disabilities, the guiding principle is to refer to the person first, not the disability. This is appropriately called using “People First Language.” It is the difference between saying “autistic child” and “a child with autism,” or “deaf and dumb” and “a person with a hearing impairment.” Use People First Language to tell what a person HAS not who a person IS.

Choosing to use the right words is the right thing to do. Using the right words can change perceptions and attitudes. Using the right words can break down barriers and build up friendships.

Two members of the CPD Consumer Advisory Committee (CAC), Blake & Robin Savage, have turned their green thumbs into a thriving plant business in Hyrum, Utah.  The Savages have been involved with the CPD for many years, serving as self-advocates on the CAC, a committee that gives input about the Center’s impact on change and advocacy in the disability community in Utah.

Blake’s green house was built with support from USU’s AgrAbility of Utah project, a collaborative project between USU’s Agricultural Systems Technology and Education Department, USU Extension, the Association for Independent Living of Utah, and the CPD. Blake has not let his cerebral palsy stop him from making a success of his hobby-turned-business.  His green thumb, his persistence, and his determination to grow plants without using pesticides have resulted in a local business that is thriving, especially around this time of year.

You can read Blake and Robin’s story in this week’s Logan Herald Journal.