Rosa’s Law will have profound impact

September 29, 2010 by cpehrson

Rosa’s Law is on its way to President Obama’s desk for his signature.  After passing last month in the Senate and last week in the House by unanimous consent, the law to eliminate the terms “mental retardation” from federal education, health and labor laws will soon be put into effect.

U.S. Senator Barbara A. Mikulski (D-Md.), who introduced the bill to the Senate, states that “This law is about families fighting for the respect and dignity of their loved ones.  This change will have a positive effect on more than 6 million Americans.”

For Rosa Marcellino’s family in Edgewater, Maryland, the passing of this law is a celebration they won’t soon forget.  Last year, when Rosa’s mother learned that Rosa, who has Down syndrome, had been labeled retarded at school, she teamed up with other parents to introduce a bill to change the terminology in Maryland state laws.  Rosa’s brother, Nick, testified at the hearing before the General Assembly, saying “What you call people is how you treat them.  What you call my sister is how you will treat her.  If you believe she’s ‘retarded,’ it invites taunting, stigma.  It invites bullying and it also invites the slammed doors of being treated with respect and dignity.”

Rosa’s Law will replace the phrase “mentally retarded” with “an individual with an intellectual disability” in health, education and labor law. It makes the language in federal law consistent with that used by the Centers for Disease Control, the health arm of the United Nations, and the White House through the President’s Committee for People with Intellectual Disabilities.

“I’m pleased that the House has approved Rosa’s Law, and hope the President will sign it quickly,” Senator Mike Enzi (R-Wy.), a co-sponsor of the bill, said. “This bill is simple in nature but profound in what it will do when it is enacted.  For far too long we have used hurtful words like ‘mental retardation’ or ‘MR’ in our federal statutes to refer to those living with intellectual disabilities. While the way people feel is important, the way people are treated is equally important. Rosa’s Law will make a greatly-needed change that should have been made well before today – and it will encourage us to treat people the way they would like to be treated.”

We applaud the Senate and the House for recognizing and respecting the dignity of people with intellectual disabilities. We applaud the Marcellino family for supporting Rosa and taking action on something that will affect people positively for many years to come.

NOTE:  President Obama signed Rosa’s Law legislation on October 5, 2010.

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Using people first language

September 28, 2010 by cpehrson

By Richard Jewkes, Senior Business Officer at the CPD.

Richard Jewkes

Working here at the CPD for several years now is refreshing and rewarding to me.  I have seen demonstrated through both word and deed what I have felt my whole life – individuals may have disabilities, but they are people first and are not defined by their disability, only by their ability.  While growing up, I have seen individuals who have overcome their disabilities and discovered their true abilities.  I always felt that it was somehow wrong or inappropriate to label someone as “disabled” or “handicapped”.  That didn’t seem right to me.  Now – having worked here at the CPD,  I have been able to finally put my finger on it.  A person may have a disability – but they are still a person.  Not a disabled or handicapped person.  We should not label people by what they can’t do.  Let’s look at and get to know a person for what they CAN do.  There is a term that is widely used that describes just this–it is called People First Language.

As I have been in the community, I have been in situations with others who haven’t been around people with disabilities.  This is very apparent based on how they talk and refer to these individuals.  As I have come across these situations, I try and do a little educating by pointing out the benefits of using People First in our language and communication.  A recent example of this came up at our Smithfield City Planning and Zoning committee meeting.  We were making revisions to a proposed city ordinance.  This particular ordinance was not written using People First.  So I took some time to explain it to the group.  The outcome of that is – Smithfield’s new ordinance will be worded correctly!  Instead of identifying individuals as “handicapped,” we have made the change by using People First Language throughout the ordinance by using “persons with a disability”.

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CMV Alert: The congenital disease mothers don’t know about

September 28, 2010 by cpehrson

The Centers for Disease Control and Prevention (CDC) has featured one of the most common congenital (present at birth but not necessarily hereditary) viral infections in the U.S. on their website, one that can cause lifelong disabilities.

Cytomegalovirus Disease, more commonly called CMV, is a virus that very few women are aware of that can be passed on to their unborn child.  According to the CDC,  about 5,500 (1 in 750) children in this country are born with or develop disabilities that result from congenital CMV infection.  More children have disabilities due to this disease than other well-known congenital infections and syndromes, including Down syndrome and spina bifida.

Babies with CMV may develop hearing or vision loss, mental disability, liver problems, or  growth problems.  CMV can be fatal, but with proper care, most infants with CMV disease survive.

Very few women (only 22% in the U.S.) had ever heard of CMV,  according to one survey.  It is a disease that is spread from person to person by close contact with body fluids.  While a pregnant woman cannot completely eliminate the risk of catching the virus, CDC outlines several things that women can do to help reduce their exposure to it.

To view this list and find out more about CMV, you can go to the CDC website.

Faith and disability teleconference

September 27, 2010 by cpehrson

The Utah Interagency Faith and Disability Initiative project of the CPD is presenting a one-hour teleconference on how to effectively conduct outreach with faith communities and train faith leaders on disabilities as well as domestic violence.

The teleconference is being sponsored by the National Community Education Directors’ Council (NCEDC), a part of the AUCD organization.  NCEDC offers community education and technical assistance for or with individuals with developmental disabilities, their family members, professionals, paraprofessionals, students and volunteers.

The teleconference will be held on October 12, 2010 at 2:00 p.m. EST.  Call in information is available online.

CPD Legacy Story: Rena Vanzo

September 22, 2010 by cpehrson

This CPD Legacy Story is from Rena Vanzo, MS, LCGC.  Rena was a student in the 2009-2010 Utah Regional Leadership Education in Neurodevopmental Disabilities Program-Autism Spectrum Disorders (URLEND/ASD) program.

The URLEND program is a multi-state collaborative CPD program that provides training to advanced standing trainees in health care and prepares them to become leaders in the Maternal and Child Health Care field.  The URLEND/ASD program offers additional training in the area of autism.

Rena Vanzo

My name is Rena Vanzo and I am a genetic counselor who works at the University of Utah in the Department of Pediatrics. Genetic counseling is a communication process which deals with the problems associated with the occurrence, or risk of occurrence, of a genetic condition in a family. This process involves helping the individual and family to understand the medical facts, the course of the condition, and the treatment/management options; to understand what other relatives may be at risk; and to make the best possible adjustment and most informed choices regarding the diagnosis. Specifically, I work in the Metabolic Clinic, where we care for children with diagnoses from newborn screening and also in the Pediatric Genetics Clinic, where individuals with medical and/or developmental problems are assessed for the possibility of a genetic condition.

I decided to apply for the URLEND program this year (2009-2010) to familiarize myself with local resources that could best serve my patients and their families. I was certainly able to accomplish that goal. For example, during the training, I learned about a local social skills group for teens with autism or autistic spectrum disorders, the Craniofacial Clinic and its various multidisciplinary providers, and the Newborn Followup Program for premature infants, to name a few. I plan to offer these resources to the families I work with that would benefit from them.  I also know, now, what to tell those families to look forward to and expect if they go to these programs.

While this was my main goal in taking the URLEND training, I had no idea about all of the other valuable experiences that were in store for me.

After completing a year of URLEND, I have no doubt improved in my abilities as a genetic counselor. Throughout the year I was introduced to many tools that can improve patient satisfaction, and ideally patient quality of life. For instance, one clinic uses a patient questionnaire to address sensitive topics like insurance coverage and depression for parents, and teasing/bullying for teenagers. I plan to use these questionnaires to help bridge the gap from avoiding these topics to bringing them into the light so families can get assistance, as needed.

I also became aware of very important issues that exist in our healthcare system, such as disparities for those with disabilities, which need to be recognized and corrected. Additionally, ideas such as person-first language and family-centered care while appreciating patient individuality and autonomy were focus points, which reinforces themes that underlie the principles of genetic counseling.

Another important activity that came through URLEND was providing a presentation on Genetics and Prenatal Care at the South Main Clinic, which primarily serves Spanish-speaking families. This presentation really turned into a discussion with about 10-12 women who have children with a genetic condition. This gave me a unique, invaluable opportunity to learn what information my patients seek most during their appointments with a genetics professional, and, perhaps most importantly, the areas and topics about which they need to be reassured.

I was also involved in the Autism Enhancement portion of URLEND, which allowed me to become comfortable and knowledgeable discussing the complexities of autism and answering parent’s questions. I was also personally able to educate my fellow URLEND trainees on a rare cause of autism.  My goal has been to spread the word about this particular cause of autism (called cerebral creatine deficiency syndromes) as patients are followed, managed, and to a large extent, treated in the Metabolic Clinic. I am currently working on a publication with the hopes of spreading awareness for this treatable condition. All in all, I am more confident to capable of taking on tasks (such as publication!) that were unbelievably intimidating before my experience with URLEND.

These are just a few of the varied and incredible experiences that I have gained over the past year in URLEND. It is a fantastic multidisciplinary program, and I would recommend this to any healthcare professional who works with children and families with disabilities, whether that professional is new or practiced in their career.

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