By the CPD Consumer Advisory Council members
“Words have the power to both destroy and heal. When words are both true and kind, they can change our world.” (Buddha)
The words that have been used through the ages to refer to people with cognitive disabilities have often been less than kind, and have usually had a negative connotation. Words such as retard, dumbbell, idiot, and others leave a bad taste in our mouths and have a direct impact on the attitude that others have towards those with cognitive disabilities. Other words that have attempted to be kinder are often seen as offensive to individuals with cognitive disabilities and their family members. Words like mentally impaired, intellectually disabled, handicapped, differentially-abled, and even special needs.
Presently, more than 6 million people have been diagnosed with cognitive disabilities in this country. A bill is now being introduced to Congress to strike the term “mentally retarded” or “mental retardation” from federal use and to substitute the words “intellectual disabilities.” The bill is called “Rosa”s Law,” and is named for Rosa Marcellino, an 8-year-old girl with Down syndrome, whose 14-year-old brother spoke to Maryland legislators recently about using “words that are hurtful.”
Mark Twain has said, “The difference between the right word and the almost right word is the difference between lightning and the lightning bug.”
We have an opportunity now to help chose the “right words” to use to refer to someone with intellectual disabilities. We have an opportunity to change the way that people think about people with intellectual disabilities, by using kinder, more thoughtful words. Buddha said, “Whatever words we utter should be chosen with care, for people will hear them and be influenced by them for good or ill.”
The Consumer Advisory Council at the CPD supports the use of kinder, more thoughtful words. We urge others to advocate for Rosa’s Law and change the words used in federal language.
By Jeff Sheen
- Volunteers cleaned the Spectrum to support the Post-secondary Education, Employment and Research project.
On Friday November 13th , following the USU women’s basketball victory over the U of U, a fantastic group of almost 40 people gathered at the USU Spectrum to pick up trash, sweep, and mop for a good cause. In just under one hour, $250 was raised to support additional social activities for the participants of the Post Secondary Education, Employment and Research (PEER) project housed at the CPD.
Participating in the cleanup effort were several students from the USU Armenian Students’ Association, Huntsman Scholars from the Jon M. Huntsman Business School and the Society for International Business and Economic Development, students from the CPD’s Interdisciplinary Disability Awareness and Service Learning (IDASL) class, Project PEER participants and family members, personnel from both Logan and Cache school districts, and numerous CPD staff and their family members.
To all those who helped, we extend a heartfelt THANK YOU! We hope to organize similar events for other CPD related projects in the future so stay tuned for the next opportunity to support a good cause.
The Grassroots Advocacy Partnership (GAP), initiated by the Utah Developmental Disability Council, is sponsoring a survey of the disability community to gather important data to use in making a case for the importance of disability services in the 2010 Utah Legislative Session.
The first link below on this blog is a survey directed primarily at people with disabilities and their families.
The next link is a survey directed primarily at professionals and /or volunteers.
This grassroots effort will help people tell their stories and educate policy makers and the community as a whole about the issues that impact the lives of people living with disabilities.
Thank you for letting your voice be heard and for making a difference!
The latest issue of the Champions for Inclusive Communities Newsletter highlights the results of the 2005/2006 National Survey of Children with Special Health Care Needs (CSHCN). The National Survey provides information about CSHCN in all 50 States and the District of Columbia, focusing on the six core outcomes identified by the Maternal and Child Health Bureau (MCHB) and its partners that promote a community-based system of services mandated for all children with special health care needs.
These outcomes provide a concrete way to measure the progress in making family-centered care a reality. The six outcomes are:
1. Families of CSHCN are partners in decision-making and satisfied with services.
2. CSHCN have a medical home.
3. CSHCN have adequate public or private insurance.
4. CSHCN are screened early and continuously for special health care needs.
5. Community-based service systems are organized for ease of use.
6. CSHCN youth receive services needed for transition to adulthood.
ChampionsInC staff is especially concerned about Outcome 5, Organizing services for families of children and youth with special health care needs so they are easily accessible. Based on the 2005/2006 National Survey of CSHCN, Outcome 5 was successfully achieved for 89.1% of families. But, what does that really mean?
ChampionsInC has recently published a fact sheet that helps readers to gain a better understanding of the issues families face when seeking needed services. This fact sheet draws data from the National Survey and is easily adapted to specific state results. It helps readers understand the important factors that pertain to 1) the ability of families to access all needed services, 2) reasons why services were not received, 3) how well services are coordinated and who coordinates them, and 4) the impact on the family as they strive to get their needs met.
To view and/or download the entire fact sheet entitled Drilling Down to Understand Outcome 5: Services Organized so Families Can Use Them Easily, go to the ChampionsInC website.
Dr. Innocenti
Dr. Mark Innocenti was elected to the Council for Exceptional Children Board of Directors as a Member-at-Large this fall.
Dr. Innocenti is the Associate Director of the Early Intervention Research Institute at the Center for Persons with Disabilities at Utah State University. He is a researcher with over 25 years of experience working with children who are at risk and their families.
He is a past president of the CEC’s Division for Early Childhood Board, and he served on the DEC Board for eight years.
“I think having an early childhood perspective on the CEC Board is important,” he said. “I think we need strong organizations to lead the field and CEC is a strong organization.” His appointment is voluntary, and as he serves he plans to continue emphasizing evidence-based practices in early intervention and special education.
His term begins January 1.
As a board member he will be involved in policy making and administration of the CEC. The council is the largest international professional organization dedicated to improving the educational success of individuals with disabilities, gifts and talents.
The CEC works to enhance professional development among its members, who include teachers, administrators, students, parents, paraprofessionals and support service providers. It also publishes cutting-edge information and research.
