United Airlines Crew Kicks Eagle Scout with Down Syndrome Out of Exit Row Without Explanation

United Airlines crew allegedly decided with one look that George Mason LIFE grad and Eagle Scout, Sean Cross, was not able to sit in an exit row seat on a recent flight. That’s because the 25-year-old has Down syndrome.

Instead of presuming competence, or at least asking Cross if he was willing to assist in an evacuation, the flight attendant refused to talk or even look at the paying passenger.

Sean Cross, George Mason LIFE Graduate

As relayed by Sean’s mother, Brenda Cross, a flight attendant demanded that the Cross family give up their seats immediately, without explanation. When Sean’s father, Patrick, asked why, they were told “He can’t sit in the exit row.” When the flight attendant was asked to speak directly to Sean, the flight attendant would not look at or speak to Sean. Subsequently, the Cross family were told they would be removed from the plane if they did not move immediately. This was done loudly and very publicly, in contradiction to United’s policy to speak quietly to passengers asked to move. The result was other passengers yelling at the family.

Read Related Post Here: How Loving Someone With a Visible Disability Forces You to Stand Out

Sean Cross and his family at the Eagle Scout Court of Honor

“They loudly announced that we had to change seats or be forcibly removed. When we asked them to talk to Sean they walked away. They then announced over the speaker that there would be a flight delay. Other passengers became irate and yelled “just move”. We moved. The pilot then got on the speaker to tell everyone to thank the volunteers who gave up their seats for us, to which people applauded, as if we were the cause of the problem. It was humiliating. It was discriminatory. This is a clear case of ableism on United’s part,” describes Brenda Cross, Sean’s mother. 

What’s United Airlines’ policy on sitting in an exit row?

The government requires any passengers seated in an exit row to be 15 years of age or older, be willing to assist in an evacuation and have no limitations that would prohibit their assistance. Before allowing passengers to travel in exit row seats, United must determine if they are able to take all required actions in the event of an emergency.”

There are 2 separate times when the airline is supposed to ask about exit row. First, as you scan your boarding pass at the gate. They did ask Sean there and he responded “yes”. They are supposed to ask again at the seats, which they never did. That’s when the Cross family were told to leave.

According to the Cross family, the flight crew at no time inquire as to whether or not Sean was capable of providing assistance to others in an evacuation. He was demanded to move simply based on the way he looks. 

If they would have asked Sean they might have learned that he if fully capable: an Eagle Scout, George Mason LIFE graduate, employee who lives independently. Even if they didn’t think he was capable after speaking to him, at least they wouldn’t have assumed incompetence based solely on a visible disability.

The flight attendant that initiated the action later told United Airlines Representatives later that she based the decision on “previous interactions with a person with Down syndrome and it had nothing to do with Sean.”

Read Related Post Here: Ending Organ Transplantation Discrimination

The National Down Syndrome Congress has issued a letter to United Airlines CEO, Oscar Munoz, demanding an apology for the family and something even more impactful:

“We believe that United should review its diversity sensitivity training and, when re-tooled, send this flight crew. We would like to know what steps United will take to ensure that no other person with a disability is treated in this manner,” wrote NDSC Executive Director David Tolleson.

Here’s my call to action:

Tweet: @United ableism is not acceptable. Apologize to Sean Cross #UnacceptableUnitedAirlines #ShameOnYouUnited.

 

Ending Organ Transplantation Discrimination

Ellie is a sassy, spunky, and very smart soon-to-be 3-year-old who loves preschool. Looking at this thriving preschooler you may be shocked to know that just months ago she and her family were fighting for her life. 

“Ellie was a hot mess even before she arrived. At 20-months pregnant we were told she would have a severe heart defect, and would likely need a heart transplant,” explains Ellie’s mom, Jackie. She went into heart failure at 15 days old, which escalated the need.

Ellie after open-heart surgery

A day after Thanksgiving, at 2 1/2 months old, the Ohio doctors said it was worse than they first thought. Ellie would need three open-heart surgeries.  They planned a heart cath to get a better idea of her current state.  The doctors explained that her risk factors for surgery had increased, but they gave Ellie a trach and g-tube and planned for a surgery that would stop the pulmonary hyper tension.

Doctors told Ellie’s mom, Jackie, that this surgery had to be wildly successful or Ellie wouldn’t be eligible for other surgical interventions and would be left with the very broken heart she was born with.  She’d have to live out what little was left of her life from there.

When her mom asked, “What about a heart transplant?”  With the knowledge that it was likely the only other option that would let Ellie survive, the doctor replied “Nope, not for her.” 

“Even if she qualified for the organ transplant waitlist, which she wouldn’t because she has Down syndrome, now she has other high risk factors that prohibits eligibility,” the doctor told Ellie’s mom. Jackie couldn’t believe it! What does Down syndrome have to do with a life-saving organ transplant?

Ellie’s family isn’t alone. A 2008 survey of organ transplant centers found that 85% consider neurodevelopmental status as a factor in determining eligibility.

The Americans with Disability Act protects against health care discrimination for individuals with disabilities, but enforcement is weak. That’s why I advocated for a state bill to address organ transplant waitlist discrimination in Ohio. My Ohio Representative, Niraj Antani, introduced the bill in August and Jackie Ward and I will be presenting proponent testimony in the Health Committee on Wednesday.

Here’s a copy of the bill.

“The possibility of a bill like this makes me tear up,” says Ellie’s mom, Jackie. “I was shocked that our doctor presented Down syndrome as a barrier for organ transplants. There are too many barriers for our kids already. We can handle difficulties in public and on the playground, but for a medical world that deems her life less valuable to save, that is unacceptable.”

Six states (Pennsylvania, Oregon, Maryland, California, New Jersey, and Massachusetts) have passed similar bipartisan legislation to prevent organ transplant waitlist discrimination. Two more (Kansas and Delaware) currently have bills working their way through state legislatures.

In most states, there are no checks and balances on the decisions transplant centers make.

Without regulations, personal bias and preconceptions can play a role in life-or-death decisions. Often doctors cite two reasons for discrimination based solely on disability:

  • Some doctors may refuse an organ transplant for individuals with disabilities that need help to follow post-transplant treatment plans (even if they have already secured post-op support).
  • Some doctors may believe that individuals without a disability should have higher priority to organ transplant wait lists.

Jackie realizes her daughter had other risk factors that may play a role in eligibility, but Down syndrome shouldn’t be one. “We were devastated! We just couldn’t imagine going home and watching our Ellie die,” Jackie explains.

The family didn’t give up without a fight.

Before her visit to Boston Children’s

“We looked to the top cardio-thoracic surgeons in the United States to find a doctor that thought she was savable,” Jackie describes. They ended up at Boston Children’s Hospital. “They said they don’t see any reason why they couldn’t do a regular repair, and give her the new heart she deserved.”

After six hours in the operating room, Ellie’s mom Jackie says her 9-month-old baby came out looking pink for the first time in her entire life. “She recovered beautifully! For the first time in 9 months we could take a breath and see past today. She had a real future,” Jackie exclaims.

Next week is Ellie’s third birthday, and every year since her heart surgeries the family sends her medical team an update. Jackie wants them to know “Ellie loves openly and brings joy to each and every day.”

Message me if you want help advocating for similar legislation in your state.

 

 

Our Family LENDs Unique Perspective to Medical Professionals

The Monday after a big birthday party is not the best day to have strangers visit my home. My house looked like Toys’R’Us exploded inside, and there was still homemade icing stuck in awkward places throughout my kitchen. Still, I made a promise, and I’m glad I did.

It was a “Day in the Life” of a family with a loved one with Down syndrome.

The Leadership Education in Neuro-developmental and related Disabilities (LEND) program asked our family to invite a clinical psychologist and disability self-advocate into our home so they could see life outside your typical treatment facility.

Clinical Psychologist, Kaitlyn Eichinger, with Troy’s brother, Hunter

“I’m so excited to get to see life from you and Troy’s perspective. I think this will change how I do my job in a clinical setting,” explains clinical psychology graduate student Kaitlyn Eichinger.

Most doctors, therapists, and clinical psychologists view disability from a pathology standpoint. When your goal is to diagnosis and treat, it’s sometimes hard to see past the disability. Also, medical professionals can sometimes forget that the parent is an expert on their child’s needs, and can provide invaluable insight.

Read Related Post Here: Ending Organ Transplant Waitlist Discrimination 

The LEND program recruits graduate students, post-doctoral fellows, and community leaders for a year-long interdisciplinary training program focused on improving the health of children with developmental disabilities. Spending time with families as part of the Family Mentor program is only part of the year-long LEND training.

Cincinnati Children’s LEND program is one of 52 programs nationwide, but our local program is the first in the nation to include self-advocates as trainees. Rachel Rice will meet with our family alongside Kaitlyn Eichinger, and will do all the same coursework.

Self-advocate, Rachel Rice, with Troy

“I like to prove people wrong about my disability. I was told I’d never be able to do office work, but I’ve worked in an office setting for the last five years and now work with Warren County Board of Developmental Disabilities,” says Rice. I thought Rachel brings a great perspective herself. It’s not often I get to hang out with adult self-advocates with disabilities other than Down syndrome, and Kaitlyn and I both agreed she rocked it!

Read Related Post Here: The Link Between Sleep and Learning

Troy and his siblings were excited to welcome Kaitlyn and Rachel into our home. They showed both ladies that Troy is more alike than different, and is an invaluable member of our family.

The two trainees will get a chance to meet with us two more times, in settings outside our home like a therapy session or playground. I’ll be sure to continue to share our journey with Kaitlyn and Rachel. Although they may only be getting one family’s perspective, it’s still gives them a glimpse into the personal lives of their patients.

There’s LEND Programs in all 50 states. If you’re interested in becoming a Family Mentor click here.

 

 

Down Syndrome Policy Expert Chosen as Parent Advisor for New National Center to Include Students with Intellectual Disabilities

Research shows that full inclusion for students with the most significant intellectual disabilities is the best path forward. Federal law requires it. But reality is much different! Talk to any parent of a student with Down syndrome, and they will tell you: “the struggle is real!” In fact, statistics show only 16% of students with intellectual disability spend the majority of their time in a general education classroom with their typical peers.

Now, the University of Minnesota’s National Center on Educational Outcomes (NCEO) plans to put more of these students in general education classes with the support they need. NCEO was recently awarded $10 million dollars from the U.S. Department of Education to create the TIES Center: Increasing Time, Instructional Effectiveness, Engagement, and State Support for Inclusive Practices for Students with Significant Cognitive Disabilities.

Read Related Post Here: $10 Million To be Awarded To Agency that Delivers Inclusive Results for Students with Down Syndrome

“We’re so excited to get this center up and running. The grant begins October 1st, and we’re thrilled to have this opportunity,” says principal investigator for NCEO, Sheryl Lazarus. The center is charged with a monumental task: to support systematic changes in the way most school districts are teaching our loved ones with intellectual disabilities (ID).

“We believe in full inclusion for these students, and now we want to make that happen for them,” explains Lazarus. The goal of the TIES Center is to get students with ID fully engaged in in the same instructional activities and curriculum as their typical peers, while meeting their individual learning needs.

Students with Down syndrome would be a target group for this program. In fact, National Down Syndrome Congress Education Policy Advisor, Ricki Sabia, was chosen to be the parent advisor and liaison for the TIES Center.

“In spite of the strong least restrictive environment language in IDEA, the vast majority of these students are still segregated from their peers. Studies show that students in separate classes have less access to the grade level curriculum and content trained teachers. NDSC is looking forward to the impact that the TIES Center will make to improve the quality of instruction for students with significant cognitive disabilities in inclusive environments,” Ricki Sabia says.

Read Related Post Here: Promoting Inclusion Through Universal Design for Learning

Lazarus says the TIES Center hopes to accomplish the following goals:

  1. Develop professional learning communities in partner state and local education agencies
  2. Develop coaching models for implementation of resources, inclusive practices and communicative competence.
  3. Improve the efficiency and effectiveness of existing resources.
  4. Support parents to become partners in the practice of inclusion for students with significant cognitive disabilities.
  5. Support systems change within the leadership of state and local education agencies for implementation of inclusive practices.

Research on better inclusion won’t be limited to the University of Minnesota. Lazarus says they will have subcontractors at the University of North Carolina Charlotte, University of North Carolina Greensboro, University of Cincinnati, CAST, University of Kentucky and the Arizona Department of Education. There will also be parent liaison’s working with the TIES Center to help parents better advocate for their child.

Read Related Post Here: How Homeschooling is One Path to Inclusion for Students with Down Syndrome

Lazarus says they plan to work backwards to find solutions to the barriers keeping students with ID out of general education classrooms. “We plan to work with schools to find out what’s working and what’s not to create better outcomes for these students. Hopefully that will translate into materials for teachers and parents. We don’t pretend to have all the answers, but we’re going to work hard to find the best path forward,” says Lazarus.

To learn more visit https://nceo.info. I’ll be posting more information on this grant project as new policies or practices are introduced.

What barriers do you see to full inclusion for students with Down syndrome? Comment below and share your experiences and thoughts.

 

$10 Million Dollar Grant Awarded to Support Inclusion for Students with the Most Significant Disabilities

Research shows that full inclusion for students with the most significant intellectual disabilities is the best path forward. Federal law requires it. But reality is much different! Talk to any parent of a student with Down syndrome, and they will tell you: “the struggle is real!” In fact, statistics show only 16% of students with intellectual disability spend the majority of their time in a general education classroom with their typical peers.

Now, the University of Minnesota’s National Center on Educational Outcomes (NCEO) plans to put more of these students in general education classes with the support they need. NCEO was recently awarded $10 million dollars from the U.S. Department of Education to create the TIES Center: Increasing Time, Instructional Effectiveness, Engagement, and State Support for Inclusive Practices for Students with Significant Cognitive Disabilities.

Read Related Post Here: $10 Million To be Awarded To Agency that Delivers Inclusive Results for Students with Down Syndrome

“We’re so excited to get this center up and running. The grant begins October 1st, and we’re thrilled to have this opportunity,” says principal investigator for NCEO, Sheryl Lazarus. The center is charged with a monumental task: to support systematic changes in the way most school districts are teaching our loved ones with intellectual disabilities (ID).

“We believe in full inclusion for these students, and now we want to make that happen for them,” explains Lazarus. The goal of the TIES Center is to get students with ID fully engaged in in the same instructional activities and curriculum as their typical peers, while meeting their individual learning needs.

Read Related Post Here: Promoting Inclusion Through Universal Design for Learning

Lazarus says the TIES Center hopes to accomplish the following goals:

  1. Develop professional learning communities in partner state and local education agencies
  2. Develop coaching models for implementation of resources, inclusive practices and communicative competence.
  3. Improve the efficiency and effectiveness of existing resources.
  4. Support parents to become partners in the practice of inclusion for students with significant cognitive disabilities.
  5. Support systems change within the leadership of state and local education agencies for implementation of inclusive practices.

Research on better inclusion won’t be limited to the University of Minnesota. Lazarus says they will have subcontractors at the University of North Carolina Charlotte, University of North Carolina Greensboro, University of Cincinnati, CAST, University of Kentucky and the Arizona Department of Education. There will also be parent liaison’s working with the TIES Center to help parents better advocate for their child.

Read Related Post Here: How Homeschooling is One Path to Inclusion for Students with Down Syndrome

Lazarus says they plan to work backwards to find solutions to the barriers keeping students with ID out of general education classrooms. “We plan to work with schools to find out what’s working and what’s not to create better outcomes for these students. Hopefully that will translate into materials for teachers and parents. We don’t pretend to have all the answers, but we’re going to work hard to find the best path forward,” says Lazarus.

To learn more visit https://nceo.info. I’ll be posting more information on this grant project as new policies or practices are introduced.

What barriers do you see to full inclusion for students with Down syndrome? Comment below and share your experiences and thoughts.