Inclusion Evolution

Empowering Individuals with Down Syndrome at School and Work

How to End Organ Transplantation Discrimination in Your State

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Did you know that people with Down syndrome and other disabilities 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 a little over a year 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 today Ohio Governor John Kasich signed the bill into law. You can read the bill here.

As the bill was being drafted a year ago, I learned about a story of organ transplant discrimination just north of where I live in Sidney, Ohio. Little Ellie’s mom, Jackie, 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

3-year-old Ellie

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. Ellie’s story had an huge impact on the Ohio House members I spoke to, who were all equally as shocked as I was that this was indeed a “thing.”

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.

Ohioans aren’t alone in their fight against organ transplant discrimination.  Seven states (Pennsylvania, Oregon, Maryland, California, New Jersey, Massachusetts, and Kansas) have already passed similar bipartisan legislation to prevent organ transplant waitlist discrimination. One more (Delaware) currently has a bill working its way through the state legislature.

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.
  • Luckily, we have faced no push back from the health care community for our bill here in Ohio.
My son at the Ohio Statehouse

Do you believe everyone, regardless of disability, deserves access to life-saving organs? Are you interested in advocating to end organ transplant discrimination in your own state? Comment below and I’ll be sure to get in touch with you.

 

Disable Poverty

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So, we just opened an ABLE Savings Account for our son, Troy.

It took about 10 minutes, and cost us nothing other than what we plan to save for our son.

What is an ABLE account you ask?

Let me explain by first sharing this shocking statistic I recently discovered while advocating in Washington, D.C., and at the end of this blog post I’m going to ask you to do your part to make a change in millions of people’s lives!

Recent studies found 78% of eligible adults with intellectual disabilities are NOT WORKING!

Just take that in for a moment. Less than one third of people with intellectual disabilities have a job!  That’s almost 50% lower employment rate than people without disabilities.

No job. No work relationships. No expansion of skills after high school. No savings. No self-reliance. No self-worth. 

It’s no wonder then that poverty and disability are bedfellows. Millions (1 in 3, in fact) of people with disabilities are stuck in an endless cycle of poverty. This is historically by design…

Before Achieve a Better Life Experience (ABLE) Act, a person with a disability (who benefits from Supplemental Security Income or SSI) could only have $2,000 to their name. Any more, and they would forfeit any government assistance — in healthcare, job training, transportation, and independent living services. This has had a chilling effect on jobs for the disabled.

Even if they can work, why bother when they can’t have more than $2,000 to their name? For those that do find jobs, some are paid less than minimum wage and/or work in sheltered workshops.

But since the ABLE Act passed in 2014, things are looking up!

The pocketbooks of people with disabilities will, for the first time, have the opportunity to grow without the threat of losing the government assistance they need to stay self-reliant.

So, what can you do to help lift up those with disabilities, and nudge them towards financial independence?

What You Can Do Today:

1.First, take the pledge! Disable Poverty is an amazing organization that’s trying to spread awareness about poverty in the disability community.

Visit their website at www.disablepoverty.org to take their pledge to end poverty in the disability community. The website gives facts about the relationship between poverty and disability.

Share this with your friends on social media.

You can do this even if you don’t have a loved one with a disability.

2. Second, open an ABLE account if you’re a self-advocate or your loved one has a disability.

It’s essentially like a 529 College Savings Account. You can save up to $14,000 a year, and the person with a disability will not lose government services as long as the account does not surpass $100,000.

Adult self-advocates can use their savings on anything related to improving their health or independence, as well as furthering their education or employment.

Even before your child becomes an adult, you as the legal guardian can use the savings account for anything disability related: medical bills, therapy, assistive technology, orthotics, etc.

There are a lot of myths surrounding ABLE accounts. Visit here to get the TRUTH!

Twenty-seven states have started ABLE account programs, and most allow non-residents to sign up. Since our family is active duty military and move a lot, we had no problem shopping around for the state with the best deal.

We chose Tennessee’s ABLE plan because there’s no start up fee or annual fee, and it has the most investment options at the lowest cost.

The down side of Tennessee’s plan is no debit card option, which isn’t a problem for us since we plan to have Troy use the money as an adult. Check your state too, because often they have a state income tax credit if you’re an in-state resident.

Visit the ABLE National Resource Center to compare state ABLE plans and choose which option is best for your child.

3. Lastly, call your legislator!

 

There are several bills in Congress right now that hope to improve the ABLE Act.

The one most salient to the Down syndrome community is the Able2Work bill, which would allow Troy and others with disabilities to save even more in their ABLE account as long as they’re employed. They can save up to $26,500 a year, or the national poverty rate (although the $100,000 SSI limit still applies).

A second improvement bill would allow parents to rollover a 529 account into an ABLE account. This is fantastic for all my mom friends whose child had a later diagnosis, like Autism.

The last improvement bill increases the age of disability onset from 26 to 46 (or half way to retirement age).

Sign up for advocacy alerts related to the ABLE Improvement Bills here, and make sure to call your legislator and tell them to approve these bills.

All of this is integral to pushing people with disabilities out of the poverty cycle. They must be able to work and save their money with pride. And Troy’s on his way to doing just that!

Class of 2031: Yes, My Son with Down Syndrome Can Go to College

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With over 260 college options, the future is looking bright for students with intellectual disabilities.

I can see the headline now: “Twin Brothers Graduate Side-by-Side, Accepted at the Same College”.

I can see my precious boys, now men, stepping onto the platform hand-in-hand, receiving their diploma’s together.

The year is 2031, and it’s the culmination of years of hard work, as well as the beginning of years of hard work to come.

But why is this even news, you ask. After all, twins graduate side-by-side every spring.

What if I told you my twin boys are so unique that the odds of recreating another birth like them is 14 in a million! I know, I know…I should play the lottery.

But this alone isn’t even newsworthy.

The real headliner here is that one boy is neuro-typical, while the other has Down syndrome.

And the truth is, no one expects much out of the latter. No one, except me!

My twin boys will begin kindergarten in a few weeks, and I’m already plotting how to send them to college. Of course, like most parents, my husband and I have done the dutiful task of setting up a 529 College savings plan for our typical son and daughter.

But doing the same for Troy, who has Down syndrome, would put his future SSI Medicaid benefits at risk. Luckily for Troy, the Achieve a Better Life Experience (ABLE) Act, was just passed in 2014, and now he can save for college too without losing much needed government assistance. Read more about ABLE here.

So, now to investigate college programs.

I know, we’re 14 years out…What can I say? I’m a bit of an obsessive planner. Ok, ok I’m neurotic. I can’t help it. But my investigation into colleges for my son has amazed me!

Did you know there are over 260 college options for Troy, and other people with intellectual disabilities? And he can receive pell grants, work study money, and scholarships to help pay the tuition.

https://www.youtube.com/watch?v=auIYOb_rptQ

The evolution to better higher education opportunities for people with intellectual disabilities really took off with the reauthorization of the Higher Education Opportunity Act of 2008. But keep your eyes and ears peeled (and your legislator on speed dial), because the act is supposed to be reauthorized again THIS YEAR!!! We can’t go backwards.

And on closer look, I noticed that these college programs are not created equal.

They range from Syracruse’s InclusiveU Program (learn more here), which boasts a 4-year certification program where students take the same exact classes as their neuro-typical peers and live with those peers too….to others where students are completely segregated and only learn life skills. Unfortunately, the vast majority of these college programs fall into the latter category.

Now, I’m not complaining. At least higher education, any higher education, exists for my son. But I’m not going to fight for 13 years for my son to be included with his typical twin brother in primary and secondary education, just to turn around and fight again in higher education.

We need to be advocating for more programs like InclusiveU. We also need the Higher Education Opportunity Act passed with more, not less funds for inclusive higher education.

My hope is by the time Troy and Hunter graduate high school in 2031, most higher education programs will be fully inclusive and lead to competitive paying jobs.

Visit thinkcollege.net to find out what college programs are in your state, and start advocating for full inclusion.

From Where We Stand: Perspectives on Fathering a Child with a Disability

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Most parents of children with disabilities would agree that at some point along this journey they’ve felt alone, isolated, confused, and scared. Fathers are no different, and many say they share a unique set of concerns, different than mothers. Research shows that disability support services focuses primarily on the needs of mothers, and are predominately provided by women.

This Father’s Day it’s important to recognize the contributions and needs of all the dads that share in this unique journey.

Below are the perspectives of fathers of children with Down syndrome. Make sure you read to the end, to get tips and resources from dads to dads in similar situations.

Read Related Post: Mother’s Day Advice From Moms Who’ve Been There

Brian Herndon, Associate Professor of Elementary Education at John Brown University

“It is interesting being the dad of a child with Down Syndrome. The overwhelming majority of people that I interact with in the disability community are mothers. There seem to be very few, if any, fathers who are actively advocating for their child(ren) with disabilities. I am part of a couple of Facebook pages that are specifically for dads, but they are, honestly, pretty generic. There is one that is called Band of Brothers, and mostly dad’s just post cute pics of their child doing fun things. The Kansas City Down Syndrome Guild has a dad’s group, but I never got involved in it. I get posts and updates, but I don’t do anything with it.

I think I’m a bit of a different kind of dad though because I am also an elementary school educator. So, children are an area of expertise for me. I have never been one to shy away from being around children, even babies. I knew pretty early on that if I didn’t speak up for my child and become knowledgeable about the law that no one else would. My wife would speak up, but I knew that schools would shoot her down pretty quickly and she wouldn’t really know what to do from there. She’s a tough woman, and she would have figured it out for sure. But, she is very comfortable with me being the one to be the strong voice when it comes to schooling and inclusion.”

Erik Weiner, Disability Advocate who’s worked on key disability rights legislation in his state

“Being a father to a child with a disablilty can sometimes be a lonely journey. Not from the aspect of being alone from your spouse but sometimes from the special needs community itself. I remember when we first found out that Devan was born with Down syndrome. Being the type of person that I am I started to reach out to as many groups as I could. As the days and weeks went on I found that many times the groups were mainly run by women and a lot of times when I would ask questions or tried to participate in an online discussion my questions and statements went unanswered. I felt like being a man/father my concerns for my child weren’t “good” enough that it was up to the mom to ask those questions. I will say that there were a few moms that reached out to me and because of that I have formed some great resource/friend relationships. As I moved on in the journey I did find support groups from men but never fully pursued active participation with them for some reason.

All my life I have been in one way or another involved with individuals with all types of disabilities. Whether it was through school, coaching, or personal experiences. So the idea of disability or an individual with a disability was not a new concept. What WAS a new concept was now I WAS that parent with a child with a disability. From the moment we were able to take Devan out on family outings I immediately went into “on guard” mode. Meaning I constantly was looking for someone to give her a second glance, to make a face, laugh at her, to have some say “looked at that retard”. I was on edge and looking for that fight. Not that I was ashamed of her or who are family was, but because I knew there were not so nice people out there. People that don’t see her the way I do. Slowly and I mean very slowly I have been able to push that “feeling” down. Because I truly don’t feel it will ever go away; just stored away in an “in-case of emergency break glass” kinda of thing.”

Mitchel Rothholz, Disability Advocate who brings over 34 years of association management experience to the Down syndrome community

“Fathers sometimes feel isolated because they are trying to figure out their role.  I encourage dads to connect with each other so they have someone going through similar challenges who they can talk to. Attend meetings of your local interest groups, attend the National Down Syndrome Congress (NDSC) convention, volunteer to be a parent-to-parent counselor or work on a committee, visit legislators. Once you engage you will get the bug and realize you are not alone. My wife, Julie, and I complement each other and play off of each of our strengths.  Julie and I have been group facilitators for the sharing sessions at NDSC, and it is interesting to compare notes of what each group discussed. Both are trying to figure out the foreign language they have been thrust into and trying to do what’s right for their kids. Navigating all of the issues can be daunting.

There will always be ups and downs in raising any child, but in raising a child with an intellectual disability the challenges can be amplified.  This is why this is a team sport with each parent supporting each other.  Identify your strengths and take on responsibility for key aspects regarding the needs of your child.  Kids with Down syndrome are no different than other kids – they will find your weak points and exploit those.  Stay strong, consistent, coordinated and support each other.”

Resources For Dads:

https://www.dadsnational.org: D.A.D.S or Dads Appreciation Down syndrome assists and supports fathers of individuals with Down syndrome

National Down Syndrome Congress Convention’s Dad’s Sharing Session. Every summer, during the NDSC’s annual convention, Dad’s breakout by age group to discuss issues common to us all.

Check out your local Down syndrome organization for a local dad’s group. Many are active in their local community.

The Arc also provides Father’s groups in many cities throughout the nation.

 

The Link Between Sleep and Learning

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It wasn’t long ago that dad’s snoring was a family joke. New research is now showing that sleep problems can lead to serious issues, especially for our loved ones with Down syndrome.

Evie is only 5-years-old, and already she’s underwent 7 sleep study.

Evie

“Her first was at 11 months because they were trying to rule out pulmonary pressure issues before doing heart surgery. She had mild apnea then,” says Evie’s mom Jen Alge. This amazing preschooler, who happens to rock an extra chromosome, was found to develop severe obstructive sleep apnea (OSA) in a follow-up sleep study.

Surgery to remove her adenoids and tonsils brought down Evie’s OSA levels to a more moderate range. “A simi MRI (which I highly recommend) showed how obstructed her airway is, so we started Evie on a CPAP (Continuous Positive Airway Pressure),” describes Alge. Evie’s mom is a disability advocate friend of mine, so I’ve heard her talk about their countless sleepless nights. “She does wear it on average 7 hours a night, but that’s only because I’m in her room 5-8 times a night at least putting the mask back on.”

Research out of the University of Arizona links Obstructive Sleep Apnea to cognitive problems. 

“Addressing sleep disruptions may be an overlooked way to improve cognitive outcomes in the Down syndrome population,” says Dr. Jamie Edgin, lead researcher and professor of Psychology and Cognitive Science. The study found that individuals with Down syndrome with OSA had cognitive, memory, language, and behavioral issues.

Edgin’s study of school aged kids found those with untreated OSA had a poor ability to learn new rules, and a 9-point difference in verbal IQ scores compared to their peers with Down syndrome without OSA. “A more recent study of preschoolers with Down syndrome found that those with OSA had fewer words and may limit how well they learn to communicate,” explains Edgin.

It’s estimated that 50-100% of individuals with Down syndrome have Obstructive Sleep Apnea (OSA), and most parents can’t predict whether or not their child has it.

Troy during his sleep study

This is true in our case. I had no suspicion that my son, Troy, had OSA, but took him in for a sleep study at 2-years-old anyway after reading Edgin’s research.

The American Academy of Pediatrics recently lowered their recommended age for completing a sleep study for children with Down syndrome from 8-years-old to 4-years-old. “The earlier we detect the sleep problems the better. There’s a push in the medical community to decide how early and I argue it should be earlier than 4-years-old,” explains Edgin. “A study out of Indiana found that babies as young as 6-months-old showed divergent sleep patterns.”

I’m glad I didn’t wait to take Troy in for a sleep study. At 2-years-old he had moderate sleep apnea. Troy got his adenoids and tonsils removed, which was enough to resolve his sleep apnea. At almost 5-years-old he’s speech has taken off despite his Apraxia diagnosis, although I’ll never know if that’s because we were so proactive in treating his OSA.

Parents should continue monitoring sleep issues even into adulthood. 

“One age group that’s not being studied is adults,” says Edgin. “OSA and other sleep issues has been shown to lead Alzheimers and cognitive declined in typical adults. The same is likely true for adults with Down syndrome. Although they may suffer these declines earlier than their typical peers.”

Edgin recommends that individuals with Down syndrome repeat sleep studies periodically throughout their lifespan. “As people age and put on more weight it can reoccur. Parents need to stay vigilante as they age,” explains Edgin.

Talk to your child’s doctor and decide on a course of treatment that’s best. Not every treatment is meant for every child. 

Goodnight kiss from brother

For our family, surgical removal of aenoids and tonsils was enough to resolve Troy’s OSA for now. Evie’s mom, Jen, says she hasn’t seen any difference in her daughter’s language and behavioral outcomes after using the CPAP, but she still thinks the treatment has been worth it.

“Evie’s always been a smarty pants and she talks all day long so I can’t credit the CPAP for any changes there. I will say she is getting more air and isn’t gasping for breath or snoring with the CPAP on so that’s a relief. The behavior changes might be more long term given her age,” explains Jen Alge.

Remember sleep is likely just one piece of the puzzle when it comes to cognitive, language and behavioral issues.

“Sleep issues alone do not fully explain the extent of language disruption in individuals with Down syndrome. We found that the good sleep group with DS was also impaired in these areas in relation to their typical peers,” explains Edgin.

“It’s important to understand the link between sleep and learning problems, but it’s not the only thing people need to keep in mind. In the end, language interventions may be more beneficial if done in conjunction with sleep interventions,” argues Edgin.

Interested in learning more about 5-year-old Evie’s OSA treatment? Read here.