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.

September 18, 2017September 18, 2017

Time to Call, Tweet, and Email Your Senator…AGAIN!

It’s baaaccckkkk! A new bill to repeal the American Care Act, and in turn cut Medicaid.

Remember the endless summer? When we all tirelessly advocated to kill the bill, and it worked. A new, worst bill is gaining traction in the Senate. Look at the graphic below to see what it would do:

It seems Republican Senators are hell-bent on keeping their campaign promise, but in doing so they’re also threatening to restructure and CUT Medicaid.

Why should you care about this bill? Because it will have a negative impact on people with disabilities. People with Down syndrome often use Medicaid throughout their life, even if their parent doesn’t meet the financial threshold for consideration. That’s because most school districts use Medicaid dollars for speech, OT, PT, bus and other services. Medicaid dollars are used in transitional services when our loved ones become adults. That means they can qualify for a job coach, transportation, and housing supports all because of Medicaid.

See Related Post Here: Why Medicaid Cuts Would Devastate the Down Syndrome Community

Here’s how this specific bill will impact the disability community:

Puts per capita caps on Medicaid, leading to devastating cuts in funding
Eliminates the Medicaid expansion and marketplace subsidies and replaces with an inadequate block grant
Allows states to waive protections for people with pre-existing conditions
Allows states to waive the requirement to provide essential health benefits (like mental health and substance use services, rehabilitative and habilitative services, and maternity care)
Penalizes states that have invested in their Medicaid system

You can read the actual bill here.

See Related Post Here: We Meet With Ohio Senator Portman’s Office in Last Ditch Effort to Save Medicaid

We’ve been here before, you know the drill! Your marching orders are as follows:

CALL (202) 224-3121

EMAIL addresses

TWEET handles

Your U.S. Senator and tell them how important Medicaid is to you and your family. Ask them to oppose the Graham-Cassidy bill or any other bill that would cut or cap Medicaid. Use the follow hashtags: #SaveMedicaid #NoCutsNoCaps

We killed the bill once. We can do it again! But it’s going to take a village!

September 14, 2017September 14, 2017

Realizing the Promise of the Endrew Supreme Court Case

It’s been six months since the U.S. Supreme Court ruled schools must be held to a “markedly more demanding” standard when educating students with disabilities. The case of Endrew F. (Drew) vs. Douglas County is the disability community’s Brown vs. Board of Education. It should have a far reaching impact on America’s 6.5 million students with disabilities.

With the school year just starting again, the question is: are parents using this case to advocate for higher expectations for their child with a disability?

The Judge David L. Bazelon Center for Mental Health Law is requesting parents contact them if they have. The center is providing support to parents who want to understand the court precedent, and wants to collect data on how the ruling is being carried out throughout the country.

“The Endrew decision is a major advance. To realize its promise, parents, students, educators, and advocates must work together to ensure school districts comply with the new standard it sets,” says Ira Burnim of the Bazelon Center.

Watch this short clip for background on the Endrew case:

In March, the U.S. Supreme Court sided unanimously with Endrew’s parents and the U.S. government at the time that argued the country should reject the “bigotry of low expectations” set by the last Supreme Court case on this topic, Rowley vs. Board of Education. That 1982 court case required schools to provide “some educational benefit” to students with disabilities, but did not establish a test to determine that benefit. The result was states and school districts with wildly varying degrees of “educational benefit.”

In his opinion, Chief Justice Roberts wrote, “a student offered an educational program providing ‘merely more than de minimis’ progress from year to year can hardly be said to have been offered an education at all.” The court creates a new standard that requires special education students to meet academic standards and advance grade to grade.

There is some concern regarding the court case and students who cannot meet general academic standards.

Endrew requires schools to provide special education that enable even the most significant cognitive disabilities to meet “challenging” and “appropriately ambitious” goals. For these students, progress may be measured against “alternate academic achievement standards” designed to promote further education, work, and independence.

Students with Down syndrome may fall into this category, and I worry that school districts will use this part of the court ruling to exclude these students. Parent advocate, Taina Karru-Olsen, says her daughter’s district staff already tried to use the case against her. “They were trying to use Endrew F. to justify extensive pullouts, more than 20% because of my daughter’s ‘need for intensive instruction,'” Olsen explains. Olsen believes all students could be fully included with the proper supports, and the Supreme Court should have stated this clearly in their ruling.

“I do think that is a danger. We tried to address it in our paper saying that it did not mean that students should be included only if they can meet grade level standards,” explains Burnim from the Bazelon Center. “Endrew was more about high expectations than about inclusion. But research and experience demonstrates that the two are very related.”

So how can parents of children with Down syndrome use Endrew to advocate for their child’s education?

“I think one way to use Endrew is to make the case that inclusion is required to enable the child to meet challenging and ambitious goals” says Burmin. We must remember that special education is not a place, but a service.

Under the Individuals with Disabilities Education Act, students with the most significant cognitive disabilities are required to be instructed and assessed on the same challenging academic CONTENT standards as all other students. The difference is that these students performance on those content standards is measured using different ACHIEVEMENT standards (using an alternate assessment). The Supreme Court did not make this distinction clear, and parents would be advised to make this clear if challenged on this point. Look here for more on this.

Also, pick up one of these nifty “IEP is not a form” t-shirts and wear it to your child’s IEP meeting. The shirt takes a quote from Chief Justice Roberts, who explained that the IEP should be used like a living document.

If you’re interested in learning more about how you can advocate for your child’s education using Endrew or to share how you already have, email Bazelon Center representatives at lewisb@bazelon.org or irab@bazelon.org.

Comment below on how this case may change your child’s education expectations. I’d love to hear your stories of advocacy.

August 21, 2017August 29, 2017

Not Dead Yet!

Imagine needing a life-saving kidney transplant, and being denied access to an organ transplant wait list.

This is the reality for some Americans living with a disability. They need a life-saving organ transplant, but doctors tell them they’re not a good candidate. Why?

Often the reason is discrimination:

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 help).
Some doctors may believe that individuals without a disability should have higher priority to organ transplant wait lists.

But tell me, who gets to decide who’s life is more significant than another’s?! This is not only a right to life issue, but a civil right’s issue!

James Wellman is living this nightmare right now. The 26-year-old with Down syndrome is likely to die soon because he his kidneys are only functioning at 12%. Doctors won’t let him on an organ transplant wait list. His family is distraught. Watch his story below.

The American with Disabilities Act (ADA) provides broad protections against healthcare discrimination, but there’s no federal enforcement when it comes to organ transplant discrimination. Often their loved one with a disability dies while families try to find recourse through ADA.

That’s why states must step up to ensure people with disabilities are protected from discrimination.

I introduced possible legislation to my state legislator, and after agreeing it was needed he spent the summer drafting the bill. Ohio State Representative, Niraj Antani, plans to introduce the bill to prevent organ transplant discrimination in my state next week. You can view the draft bill here: Organ Transplant Waitlist Anti-Discrimination Bill

Only 5 states (California, Massachusetts, Maryland, Pennsylvania, and New Jersey) currently have organ transplant anti-discrimination laws. Three other states (Delaware, Kansas, Oregon) currently have a bill working it’s way through state legislatures. All of these bills are bipartisan.

With help from disability groups across my state, as well as doctors’ organizations, I hope we’re able to lead the charge against discrimination for our loved ones here in Ohio…

Because they’re #NOT DEAD YET!

If you’re interested in introducing an organ transplant anti-discrimination bill in your own state visit my “Advocacy” page under “Resources.” The NDSS created a toolkit for advocates with model legislation and other helpful resources on this topic.

I will post updates of our efforts here in Ohio as well.

July 18, 2017July 18, 2017

Improving Post Secondary Opportunities for Individuals with Down Syndrome

When Laura Lee graduated from high school in 2001, there were no college programs in her state for students with intellectual disabilities (ID).

“Far too often, what is typically available for these students are ‘transition programs’ in high school that are isolated and a pipeline to living a life of poverty and either languishing at home or working in segregated sheltered workshops receiving below-minimum wage,” says Stephanie Smith Lee, Laura’s mother and Interim Policy Director for the National Down Syndrome Congress.

The Lee’s believed Laura and all students with Down syndrome deserved better. So, they petitioned George Mason University to start a pilot program and advocated nationally for more inclusive post-secondary programs. Laura became one of the first graduates of Mason LIFE Program, and today there are more than 260 college programs in 47 states for students with intellectual disabilities (ID).

Laura Lee’s resume was impressive, even for someone without a disability. It included her graduation from George Mason University, her work at the World Bank, volunteering at a food bank, and becoming a nationally recognized self-advocate giving speeches nationwide.

In March 2016, Laura Lee passed away in her sleep. For thousands of people nationwide who mourned Laura’s passing, she had become a symbol of what can be accomplished when high expectations and advocacy meet. And Laura’s mother did not stop advocating upon her death.

Laura and Stephanie Lee presenting together

“She’s the inspiration for my continued work,” Stephanie Smith Lee says.

As Interim Policy Director for the National Down Syndrome Congress, Lee is now in support of a newly released U.S. House of Representatives bill that will improve upon the Higher Education Act. Lee was instrumental in helping push through improvements in 2008, when the law was reauthorized. At that time, legislation was included to allow students with ID to apply for financial aid for the very first time, as well as the funding of model post-secondary programs for students with ID.

The new House bill released last week would increase inclusive post-secondary opportunities for students with ID. “One big change that will create a more inclusive environment is that model post-secondary programs that receive federal funding to educate students with ID must now offer inclusive housing on campus,” Lee explains. The bill would also change language in the law to require model programs to focus not just on academics, but career development as well.

The House bill would be attached to the reauthorization of the Higher Education Act expected this year, and would include the following amendments:

Using competitive grants to train faculty to deliver accessible instruction.
Establish an Office of Accessibility at every Institute of Higher Education.
A new grant program to implement Universal Design for Learning (UDL) .
A new commission to increase accessible materials and technologies.
Updates to data collection activities.
Updates to the program that funds Institutes of Higher Education that educates and integrates students with intellectual disabilities.

U.S. Representative, Mark DeSaulnier (D-California), who sponsors the bill says: “This first of its kind legislation takes a comprehensive approach to providing students and institutions with improved training, greater resources, and expanded services—bringing us one step closer to ensuring that all Americans have the opportunity to earn a degree, find a job, and achieve the American Dream.”

The National Down Syndrome Congress fully supports the improvements. “Students with intellectual disabililities want the opportunity to go to college like their siblings and friends, to learn, to experience independence, and become employed after graduation. Postsecondary opportunities for students with intellectual disabilities offer a new path to academic access, social inclusion, and working and living as independently as possible in the community,” says Lee.

Laura Lee with her mother, Stephanie Smith Lee in 1992

The 2008 reauthorization of the Higher Education Act had very strong bipartisan support. So far, the current bill only has Democrats sponsoring the bill. Still, Lee hopes that there will be continued bipartisan support for further improvements for post secondary inclusion.

“I’m so exciting to see how far we’ve advanced since Laura and I started advocating so many years ago. So many more students have opportunities, and have gotten jobs and live in their communities. They have friends in the community and are contributing members of society. But we’re still not where we should be. The current bill will help pave a better path forward,” says Lee.