Author: Maya

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.

ultra sound illustration

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.

A Promising Jobs Program Cries Out For Expansion

By Josh Kovner, Hartford Courant

protest for jobs
Families have had to fight against cuts to jobs programs for people with intellectual disabilities. On Tuesday, the director of The Arc of Farmington Valley described for state lawmakers a program that is developing motivated, independent workers. (Mark Mirko / Hartford Courant)

The leader of a group serving people with intellectual disabilities in the Farmington Valley told Sen. Ted Kennedy Jr. and other legislators on Tuesday about an internship program that so far has developed about 20 motivated workers, all of whom have gotten jobs at competitive wages.

Stephen Morris, executive director of The Arc of Farmington Valley, had struck a chord, making it plain that this training course, called Project Search, differs markedly from others because it takes place inside a host business and stresses independent, mainstream work, rather than group employment.

It is, Morris said, one of those unsung programs that has proved its worth, and pays for itself many times over in economic benefits and the doors it thrusts open for people.

But Kennedy’s first question hit on why Morris, whose agency is known as FAVARH, was testifying before the legislature’s Intellectual and Developmental Disabilities Caucus.

“Why hasn’t this been replicated across the state?”asked Kennedy, a Democrat from Branford.

Morris said he very much wants that to happen and that he has had to battle through some discouragement since he learned a few years ago about Project Search — begun in 1996 at the Cincinnati Children’s Hospital as a way to fill high-turnover jobs.

He said it has been a challenge to consistently find the right executives of midsized to large businesses who can snap their fingers and have their organizations host a Project Search internship class.

“I knocked on doors at UConn Health for two years until John Hampton [the Democratic representative in Simsbury] connected me to the right person,” Morris said.

But when that happened, things moved quickly.

Project Search participants, usually 20 to 22 years old, are in the last year of their federally mandated high school program or their first year out.

At UConn Health, FAVARH’s group convenes each morning during the school year in a classroom. Then the eight to 12 participants fan out, work at their job sites in the pharmacy, the mail room, with the cleaning crew, in the cafeteria or elsewhere in the sprawling complex. They wrap up the day back in the classroom to discuss the real-world experience and address weak spots and concerns.

“We build skills in the classroom and practice them through the day,” said Morris.

“Getting jobs at competitive wages is the largest contributor to the health and happiness” of people with disabilities, said Edwin “Win” Evarts, executive director of The Arc of Connecticut in Hartford.

He said the state was once a national leader in job placement but has slipped to the middle of the pack, in part because the departments of Rehabilitative Services, Developmental Services and Economic Development haven’t been unified in the way each spends its job-training funds.

Evarts said the three departments are now trying to come up with a coordinated approach that allows the public money to go further. He said it would be worthwhile for the departments to hire one unbiased project manager to see the effort through.

Morris said it costs a nonprofit agency about $20,000 to $25,000 to start Project Search — which he said was less expensive than the typical group-employment training regimen. In that scenario, job coaches travel to the job sites with the work teams. Project Search participants are trained to work independently, without group support.

Nationally, 75 percent of Project Search graduates are hired, often by the host businesses. FAVARH, said Morris, has had a 100 percent placement rate in the two years his agency has been at it.

On April 17, the founder of Project Search, Erin Riehle, will meet with Morris’ team and representatives of five other Arc agencies from across the state.

If several of them adopt the program, it will represent the largest boost that Project Search has received in Connecticut.

Rep. Mitch Bolinsky said he wanted to hasten the spread across the state.

Bolinsky, a Republican from Newtown, mentioned Hampton’s work in referring Morris to the right person at UConn Health and said dozens of legislators could serve as local ambassadors for Project Search and work to make similar connections.

“I’d like to see it hooked up,” he said.

Added Kennedy, “When you give someone with an intellectual disability a job, you are giving them their freedom.”

CT LEND Students Present at the EHDI Meeting in Denver Colorado

2018 Early Hearing Detection & Intervention Meeting

In its 17th year the EHDI Meeting has built a strong reputation for bringing together a wide variety of attendees including those who: work in state Early Hearing Detection and Intervention programs; assist in EHDI efforts on the federal level; provide screening, diagnostic and early intervention support at the state/ local level to young children with hearing loss and their families; champion Medical Home activities within each state; are parents of children with hearing loss; or are deaf or hard-of-hearing adults who are helping to expand opportunities for young children with hearing loss. EHDI Meeting participants range from state and local programs to the federal level and from academics to families.

2017 – 2018 CT LEND Students Presenting

5 Students from the 2017 - 2018 CT LEND class attended the EHDI Annual Meeting to present and learn, they are: Olivia Dewald, Julia Garrick, Casey Turovac, Shannon Wannagot, and Torri Ann Woodruff.

Casey and Olivia

Casey Turovac and Olivia Dewald presented a poster entitled "National Child Care Provider's Awareness of Congenital Cytomegalovius (cCMV)".

Julia and Shannon

Shannon Wannagot with Julia Garrick who presented a poster on "Preparation of LEND Audiology Trainees to Serve Children with Autism and Other Neurodevelopmental Disabilities".

Congratulate Torri Ann Woodruff!

Torri won the award for Parent Perspectives and Support for her research poster "Social Support Service Preferences of Parents and Caregivers of Children Who are Deaf or Hard of Hearing". View and download the the poster below!

Tori's poster

Legislative Breakfast in the Legislative Office Building

UCEDD table top

The UConn University Center for Excellence in Developmental Disabilities joined sister agencies of the CT Developmental Disabilities Network at a legislative breakfast in the Legislative Office Building on 2/21/18. The event was hosted by the CT Council on Developmental Disabilities. Disability Rights CT, our state’s privatized Office of Protection and Advocacy, also displayed materials. Many legislators and members of the public had an opportunity to learn about DD network.

Early Intervention Credential Program Grads!

Congratulations to the scholars in the Early Intervention Credential Program for successfully completing the year-long program!

EISP Cohort 2
Congratulations to the scholars in the Early Intervention Credential Program for successfully completing the year-long program!
Standing row from left: Nicole Cocce, Heather Nacca, Cathy Piterski, Dorit Dahan, Rebecca Smith, Allison Witkovic, Ibeth Bansleben and Cheryl Anne Maccione
Sitting from left Megan Drury, Corina Gutierrez, Josefina Castillo, and Katie Imes

For More Information Contact:

Paralyzed student experiences Burning Man through VR


Musical theatre student Evan W. Gadda has heard stories about Burning Man but hasn't made the journey himself. He is asthmatic. and because of cerebral palsy, paralyzed and confined to a wheelchair, so making the trip to Black Rock City has been deemed impossible, until now. Through a HTC Vive VR headset, he has been able to attend the desert event virtually.

His response? "Oh my God."

The team at University of Nevada, Reno who created the experience for Gadda, also sent him to Squaw Valley to (virtually) ski, something he hasn't done since he was 15 years old. It brought him to tears.

Here are the two videos he watched:

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DeVos rescinds guidance documents on rights for disabled students

By Moriah Balingit, October 21

President Trump Education Secretary Betsy DeVos
President Trump looks at Education Secretary Betsy DeVos as he speaks during a Feb. 14 meeting with parents and teachers in the Roosevelt Room of the White House. (Evan Vucci/AP)

The Education Department has rescinded 72 policy documents that outline the rights of students with disabilities as part of the Trump administration’s effort to eliminate regulations it deems superfluous.

The Office of Special Education and Rehabilitative Services wrote in a newsletter Friday that it had “a total of 72 guidance documents that have been rescinded due to being outdated, unnecessary, or ineffective — 63 from the Office of Special Education Programs (OSEP) and 9 from the Rehabilitation Services Administration (RSA).” The documents, which fleshed out students’ rights under the Individuals with Disabilities Education Act and the Rehabilitation Act, were rescinded Oct. 2.

A spokeswoman for Education Secretary Betsy DeVos did not respond to requests for comment.

Advocates for students with disabilities were still reviewing the changes to determine their impact. Lindsay E. Jones, the chief policy and advocacy officer for the National Center for Learning Disabilities, said she was particularly concerned to see guidance documents outlining how schools could use federal money for special education removed.

“All of these are meant to be very useful … in helping schools and parents understand and fill in with concrete examples the way the law is meant to work when it’s being implemented in various situations,” said Jones.

President Trump in February signed an executive order “to alleviate unnecessary regulatory burdens,” spurring Education Department officials to begin a top-to-bottom review of its regulations. The department sought comments on possible changes to the special education guidance and held a hearing, during which many disability rights groups and other education advocates pressed officials to keep all of the guidance documents in place, Jones said.

This is not the first time DeVos has rolled back Education Department guidance, moves that have raised the ire of civil rights groups. The secretary in February signed off on Trump’s rescinding of guidance that directed schools to allow transgender students to use bathrooms in accordance with their gender identity, saying that those matters should be left up to state and local school officials. In September, she scrapped rules that outlined how schools should investigate allegations of sexual assault, arguing that the Obama-era guidance did not sufficiently take into account the rights of the accused.

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