Resources – Page 21 of 31 – Inclusion Evolution

October 23, 2017January 18, 2018

How Military Service Creates a Secure Future for Our Son with Down Syndrome

Our family has a love-hate relationship with the United States Military. It’s taken us away from family and friends and each other. It’s lead to the death of good friends and painful memories of war and deployments. It’s also taught us what’s important in life: honor, duty, and living every moment like it’s your last.

As one would expect our relationship with the military leans more on the “love” side as my husband gets closer and closer to retirement. If I’m honest, the military has afforded our entire family a brighter future. For my husband and I, who grew up working poor, it’s meant reaching the American dream debt-free. More importantly, for our son with Down syndrome it means a exceptional life and secure future, even after we pass away.

Read Related Post Here: Open Letter to My Twin Sons, One with Down Syndrome, On Their 5th Birthday

Signing up for military service means making sacrifices 99% of Americans wouldn’t even consider, but the rewards are also worth mentioning. For the sake of this blog I’ll limit those sacrifices and rewards to those pertaining to our son, Troy, who has Down syndrome. The goal of this post is not to recruit you for military service (LOL- like I could even if I tried), but to give you a glimpse of life in the military with a child with a disability.

Taking Care of the Future Today

I’ll start at the end first, because I’m just so excited and want to share what 20 years service with the United States military will get Troy. One of the first thing someone (I don’t even remember who) told us when Troy was born is that he would have free Tricare health care for life. Many individuals with Down syndrome are eligible for Medicaid when they become adults, but having a secondary insurance means Troy’s health care will be secure. Read more here.

The other huge perk is my husband’s retirement pension. On the day he retires we can request that Troy receive the pension at my husband’s death, rather than myself. This seems like a no-brainer to me. Troy is likely to out-live both Trenton and I. Likely, I’ll always be able to work and support myself, but Troy may need extra financial help throughout his adult life. Just beware and be prepared! You will need to open a “First Person Medicaid Payback Trust,” to ensure your child’s SSI and Medicaid benefits are not put at risk. As the title of the trust states, the funds in the trust upon your child’s death will be paid back to Medicaid. Learn more here.

Read Related Post Here: Brother Urges Parents to Prepare Typical Siblings for the Future

Free Socialized Health Care

We always joke that the military is the only place in America where you can experience socialism, even though we’re fighting for capitalism. I’ve had friends complain about their health care through the military, but really?–it’s FREE. Everything is free. My husband doesn’t have a deduction out of his paycheck for health care. When you have a child with Down syndrome and multiple health problems, that is HUGE. We don’t pay a dime for medicine, specialists, surgeries, private therapies, or orthotics.

I have too many civilian friends to count who don’t have their child with Down syndrome in private therapy or orthotics because it’s so expensive and their insurance doesn’t cover it. I can’t imagine our insurance not covering our child who has Childhood Apraxia of Speech and poor gait/low tone. I never have to beg for a referral or service. In fact, I usually tell my son’s military pediatrician which private specialists and therapists I want him to see and they sign the referral no questions asked. Troy even has his own case manager who I absolutely love. If we ever have a problem with a referral or a question about anything I just call her and she takes care of it.

The Exceptional Family Member Program

Every branch of government has this fabulous program called “The Exceptional Family Member Program” (EFMP). The program was created in the 1980s to help military families identify the medical and educational resources they need at their current duty station. The “exceptional family member” can be anyone in the family who needs extra assistance. I had a friend who battled breast cancer in her twenties and her military husband was able to get home health-care resources through EFMP. I also had a friend who’s child had a speech delay, and was able to get therapy services through EFMP. It’s worth noting that everything I mention here is absolutely FREE.

When you’re moving around a lot (we’ve moved 4 times in 10 years of marriage), you have added stress with a child with a disability. I’m constantly worried that our next duty station may not have a good children’s hospital or private therapy services or an inclusive school for Troy. Although the military mission is always paramount in any move, EFMP takes a family’s documented needs into consideration. We’ve made a point of staying away from states that are known to do a poor job educating and employment individuals with intellectual disabilities. Read about EFMP here.

Respite Support

I’m often asked how I survive with three kids, a husband in medical residency, and no family support. Our closest family members live 500 miles away, which is the closest we’ve lived to family since my husband enlisted at 18-years-old. The answer I give them is wine and my respite provider. Everyone who qualifies for EFMP is guaranteed a highly-qualified respite provider and 40 hours a month (in the Air Force) of free babysitting. This is my saving grace!

Our providers must have some professional connection to children with disabilities. We’ve had nurses, clinical psychologists, and teachers. The respite providers are constantly in training; learning the newest child care research and medical techniques. Their also highly compensated at a price I would never be able to afford. This ensure high quality care that I can depend on. I’m always free on a Saturday night!

Read Related Post Here: The Quiet Before the Storm as My Son with Down Syndrome Grows Up

I still worry often about our military future and Troy. I worry about getting out or staying in, and the impact on all three of our kids. But the military has forced me to live in the moment and accept that change is inevitable. For Troy, who hates change and transitions, military life may help him face his fears and become a more flexible adult. It has for me!

Are you or do you know a military family with a child with special needs? How has your experience been? I’d love to hear about your military story. Comment below!

October 19, 2017October 18, 2017

How to End Organ Transplantation Discrimination in Your State

Did you know that people with Down syndrome face significant barriers to life-saving organ transplants? I was shocked when I first heard that this was a “thing.” How could anyone decide one life is less worthy than another solely based on their disability?

That’s why six months ago I called my state representative, Niraj Antani, and asked him to draft a bill giving greater legal protections for life-saving organ transplants to people with disabilities. Ohio House Bill 332 was born, and recently went to the Ohio House Health Committee. You can read the bill here.

Autism Advocate, Jennifer Powers Alge, Representative Niraj Antani, and myself at the proponent hearing for Ohio H.B. 332

As the bill was being drafted I learned about a story of organ transplantation discrimination just north of where I live in Sidney, Ohio. Little Ellie’s mom was told shortly after she was born that Ellie couldn’t receive the heart transplant she desperately needed to stay alive because she has Down syndrome. Read her story below.

Read Related Post Here: Little Ellie is Denied the Heart She Needs

As soon as I connected with Ellie’s mom Jackie Ward, I knew she had to share Ellie’s story with Ohio legislators and the world. Ellie would be the change-maker! Jackie was hesitant to share at first, but over time she realized the impact Ellie’s story could have on the passage of H.B. 332. Yesterday, I was thrilled to walk the halls of the Ohio State House with Ellie and her family.

We testified in support of House Bill 332, and there wasn’t a dry eye in the committee room. I felt so privileged to give testimony in favor of Ellie and thousands of other people with disabilities that face barriers to life-saving health care. My speech gave details that included the six other states that have passed similar legislation (Oregon, Pennsylvania, Maryland, California, New Jersey and Massachusetts). Two other states (Kansas and Delaware) are currently working on a bill in their state legislatures.

We also had a fellow advocate and Autism super-mom, Jennifer Power Alge, provide the perspective of families with loved ones with Autism. Down Syndrome Association of Central Ohio Executive Director, Kari Jones, gave insight into the amazing achievements of people with disabilities, and how all life is inherently worthy of life-saving health care. But by far, the star of the show was Ellie and her mom who told her story.

Read Related Post Here: Ending Organ Transplantation Discrimination

The Americans with Disabilities Act actually provides broad protections for individuals with disabilities, but there’s no specific protection for access to organ transplantation. In fact, a group of 30 Republican and Democratic U.S. Representatives signed a letter just last year to the Department of Health and Human Services asking them to issue federal guidance to protect individuals with disabilities against organ transplantation discrimination. Unfortunately, nothing came of that letter. That’s why states need to act.

If you’re interested in advocating for a similar bill in your state I would start with the related posts above, as well as the following toolkits: ASAN Organ Transplantation Toolkit and NDSS Organ Transplantation Toolkit

I would also encourage you to watch testimony from Ellie’s mom below, as well as an Oregon mom who’s non-verbal Autistic son was refused a heart transplant in Oregon and ended up leaving the state and getting the transplant done in California. Both are extremely moving and puts a human face on an otherwise dry bill. Watch the Oregon mom starting at 38 minutes and 51 seconds here.

Our bill received a warm reception from Ohio House Health Committee members, who were also shocked that this was a real “thing.” The committee moved to the next step in the process, an opponent hearing and then a vote. So far, there as been no public opposition from transplant centers or doctors. Really the bill is not an attack on either of these institutions. There’s no penalty clause in the bill, but it does allow families to seek legal recourse to secure an organ transplant if they feel their loved one has been discriminated against. It’s more about ensuring families know they have greater legal protection to help advocate for their loved one when they need it most.

I will keep you posted on our bill as it moves forward. What are your thoughts on this issue? I love to hear from my readers, so leave a comment below or send me a private email.

October 17, 2017October 18, 2017

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.

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.

October 16, 2017October 16, 2017

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.

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.

“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.

October 12, 2017October 11, 2017

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.

“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.