Announcement: UCEDD’s Bethanne Vergean Selected as Connecticut Act Early Ambassador

UCEDD's Bethanne Vergean

Photo: Bethanne Vergean

The University of Connecticut’s (UCONN) Center for Excellence in Developmental Disabilities (UCEDD) is pleased to announce that Bethanne Vergean who is an Early Childhood Specialist at the UCEDD has been selected to be the Connecticut Act Early Ambassador for Centers for Disease Control and Prevention (CDC).

Act Early is a national campaign aiming to improve early identification of children with autism and other developmental disabilities so children and families can get the services and support they need.

Created by the CDC’s National Center on Birth Defects and Developmental Disabilities and other federal partners, the campaign aims to educate parents, caregivers, and providers about childhood development, including early warning signs of autism and other developmental disorders, while promoting developmental screening and intervention.

Autism and developmental disabilities are common in the United States. A recent study shows that 1 in 59 children were identified with Autism yearly and that about one in six children have been diagnosed with a developmental disability. An estimated 165,000 Connecticut children have, or are at increased risk for, a chronic physical, developmental, behavioral and/or emotional condition and require health and related services beyond routine requirements for children in general.

Ms. Vergean’s responsibilities will include serving as the Connecticut liaison to the national Act Early campaign, providing training and technical assistance to state agencies, local Early Childhood programs, Community Health Centers, and other Health Care agencies to increase the identification and service provision to infants and young children and their families.

As an Act Early Ambassador, Ms. Vergean will play an important role in educating and working with Connecticut’s parents, healthcare professionals, and early educators about the importance of acting early on concerns about a child’s development.

On behalf of the UConn Center for Excellence in Developmental Disabilities, Mary Beth Bruder, PhD, Director said, “We are delighted to be chosen as the site for the Connecticut Act Early Campaign as it will continue our center’s service to Connecticut’s youngest citizens. Bethanne is the perfect choice to be the Act Early Ambassador as she has been an early childhood advocate at the University of Connecticut’s UCEDD for many years.”

For more information, visit: www.cdc.gov/ActEarly

Event: Providing Person-Centered Healthcare for Persons with Disabilities

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Join us for dinner and a panel presentation to hear from speakers from the disability community. This event is free and registration is required.

Date: Monday, March 11, 2019

Time: 5:30 p.m. – 7:30 p.m. (Dinner served at 5 p.m.)

Location: UConn Health Cafeteria

The panel will include remarks from:

  • Linda Barry
  • Molly Cole
  • Chris Blake
  • Keith Mullinar
  • Alexia Bouckoms
  • Therese Nadeau

You can register for both the dinner and presentation, or just the presentation, using our Survey Monkey link.

Event Accessibility Statement:

If you require an accommodation to participate in this event, please contact the UConn Center for Excellence in Developmental Disabilities at 860.679.1595 or jozef@uchc.edu by Wednesday, March 6, 2019.

Download and share the event flyer.

Sponsored by:

The UConn Disabilities Interest Group, UConn Center for Excellence in Developmental Disabilities (UCEDD), and the Connecticut Leadership Education in Neurodevelopmental and Related Disabilities (CT LEND).

Family Transition Training 2019

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This training will help you plan appropriate steps toward your child's future. This is an intensive three session learning opportunity, plus one additional session for follow-up.

Dates: 

Session 1 - Wednesday, March 27, 2019 -- from 6:00 p.m. to 9:00 p.m.

Session 2 - Saturday, March 30, 2019 -- from 9:00 a.m. to 4:00 p.m.

Session 3 - Wednesday, April 3, 2019 -- from 6:00 p.m. to 9:00 p.m.

Session 4 - Saturday, April 27, 2019 -- from 9:00 a.m. to 1:00 p.m.

Location:

University of Connecticut

Center for Excellence in Developmental Disabilities

270 Farmington Avenue - First Floor, Suite 181

Farmington, CT 06030

Presenters:

 

Advance registration required by Wednesday, March 20, 2019.

This training is free, however, you will be expected to commit to attending all four sessions. 

Register for this training.

 

For questions please contact Linda Rammler at lrammler@uchc.edu or call 860.679.1585. You are welcome to download our event flyer and share it with your networks.

Building a Great Life

A Conference for Self-Advocates, Parents, Caregivers, Siblings and Providers

The Second Annual Building A Great Life Conference took place at the Red Lion Inn in Cromwell. There were Keynotes from Ann and Rud Turnbull; Andy Imperato, Director, AUCD and Russell Lehmann, Author and Self Advocate plus a Special Video Message from Senator Chris Murphy. Included were breakout sessions and vendor displays.

Building a Great Life keynote
Building a Great Life keynote ballroom
Jay and Ann Trunbell
Ann and Rud Turnbull present on the rewards and challenges of raising their son Jay Turnbull.

Building a Great Life speakers
Mary Beth Bruder, Ann and Rud Turnbull, Andy Imperato, Russell Lehmann and Molly Cole

Andy Imperato
Andy Imperato, Director, AUCD speaks on the state of Disability law. Watch Andy's complete remarks below:

The Ethical Case for Having a Baby With Down Syndrome

New York Times Op-Ed Contributor Chris Kaposy, Dr. Kaposy is a bioethicist.

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My wife’s ultrasound turned up something abnormal in the baby’s heart — an otherwise innocuous feature that correlates with genetic conditions such as Down syndrome. A series of tests confirmed that our son indeed had Down syndrome. We were given the option of abortion, but my wife, Jan, already regarded him as our baby, and a few months later Aaron was born.

The first days after the diagnosis were hard. We thought about our son’s future, and our future. We went through a period of grieving. But we soon came to accept that Aaron would have Down syndrome, and to accept him as a member of our family. By the time Aaron was born, it was a joyous occasion. Today, almost nine years later, Aaron is an affectionate boy with blond hair and a crooked smile. He is passionate about hockey (we’re Canadian after all) and about animals. If he could grow up to be anything, he would probably be a veterinarian.

Many parents make a different choice. In the United States, an estimated 67 percent of fetuses with prenatally diagnosed Down syndrome are aborted. In Canada, the rate could be even higher, though there aren’t any reliable studies on it. This has become a front in the American abortion-rights debate, and bills have been passed in North Dakota, Ohio, Indiana and Louisiana (and introduced in Utah) that make it illegal for a doctor to perform an abortion because of a positive prenatal test for Down syndrome.

My wife and I are pro-choice and oppose placing limits like these on abortion. Nonetheless, I wish more people would include children with Down syndrome in their families. For this to happen, we don’t need new laws; we just need more people to choose to have such children.

I understand the emotional turmoil that a prenatal diagnosis can bring. But after parenting Aaron through difficulties and joys and seeing the curiosity and delight he brings to our lives, I wonder why more people do not choose to bring children like him into the world.

People with cognitive disabilities are, of course, commonly subject to ridicule, even by political leaders. I don’t mean just President Trump — President Barack Obama once made an offensive joke about the Special Olympics (he apologized). People with Down syndrome have tried to counter bias against them by speaking out about how they contribute to their communities. But acceptance in our communities seems scarcely possible without acceptance into our families.

baby Aaron
The author's son Aaron, as a baby.

Having a baby with Down syndrome may seem too demanding to some prospective parents. It may seem that those of us who choose to have children with Down syndrome are either irresponsible or saintly. From my experience, however, such parents tend to be utterly normal and levelheaded people.

Parents of children with Down syndrome have written extensively about their lives and have contributed to many research studies, as have people with Down syndrome themselves. These sources tell us that the lives of people with Down syndrome tend to go well. Their families are as stableand as functional as those that include only children who aren’t disabled.

So why is there such reluctance to have children with Down syndrome? One explanation shows up repeatedly when parents recount the early days after receiving their child’s diagnosis. They feel a sense of loss because they no longer dream that their child will get married, go to college or start a family of their own one day — in other words, that they will not meet the conventional expectations for the perfect middle-class life. In fact, some people with Down syndrome do accomplish those things. Nonetheless, hopes and dreams of perfection might be a strong motive for parents to choose abortion.

Phil Strain speaks at the CTLEND Class

Measuring Fidelity of Evidence-Based Practices in Early Childhood Special Education: The Foundation of Child and Family Outcomes

Phil Strain presentingPhil Strain, Ph.D. of the University Denver and the James C, Kennedy Endowed Chair in Urban Education spoke Friday the 13th to the CT LEND class on "Measuring Fidelity of Evidence-Based Practices in Early Childhood Special Education: The Foundation of Child and Family Outcomes" Further information about Phil's work can be found on the internet at the National Center for Pyramid Model Innovations (challengingbehavior.org).

Mary Beth introduces Phil
Mary Beth Bruder of the UCEDD introduces Phil Strain.

 

LEND class 4-13-18

The LEND Class introduces themselves to Phil.