“Our children are worthy of EQUITABLE SPACE in this world. This is non-negotiable.”
-Heather Avis of The Lucky Few Podcast
This week my family had the honor of using our voices for needed change. We traveled to Washington D.C.; alongside National Down Syndrome Society, National Down Syndrome Congress, GLOBAL Down Syndrome Foundation and more than 350 advocates, we took on Capitol Hill Day.
Moms, dads, brothers, sisters, family, friends… you name it, they showed up and demanded to be heard. Medical advancements and early intervention therapies have moved lives and abilities forward, while our laws have remained the same; outdated and discriminative.
Our very busy day with back to back meetings even permitted us to use the underground tunnels to make all our meetings on time. This day will always bring joy. It will be one I talk about to my family for the rest of my life. I think the most amazing takeaway is that my 15 year old daughter, Henley, learned her voice matters. She spoke with Congressman Mike Ezell. Henley shared her concerns; she understands that Hudson will likely outlive her dad and me, that her future will one day require her support in all ways. She recognizes that the best case scenario is for Hudson to be as independent as possible. That he should be able to have fair wages, savings and be a part of the community. And no matter where she lives, Hudson should be able to join her without losing what we’ve been able to provide. Not require her to move to him. Henley also shared her concerns for families that don’t have the same support that we have. Her heart is pure gold. She desires for all Hudson’s buddies to have unlimited opportunities and be included in their communities. I only learned my voice really matters since Hudson’s birth. Henley learning this now is powerful.
We talked about society’s expectations across the board: They are LOW! Most adults with Down syndrome often get talked to like young children. Most decision making adults see or hear the diagnosis and automatically build a wall. They don’t take time to see the abilities. If we could re-story the way people see our children, we could eliminate much of this fight for inclusion. I don’t want to change my son’s extra chromosome; he was born just as he was designed. We have to do a better job to accept him as he is, not look to always changing him. Again, he deserves equitable space in this world. You will never make me uncomfortable by asking any questions. I will only be uncomfortable if you whisper, stare, ignore, hide or if you are rude. Don’t read that wrong, I won’t be uncomfortable for me, I am uncomfortable for you. Hudson is who he is and I am proud and embrace this journey we are on together.
Our meetings on Capitol Hill included U.S. Representative Mike Ezell and Staffers, Katy Roberts from U.S. Senator Roger Wicker’s office and U.S. Senator Cindy Hyde-Smith had something come up, so we met with Kendall Garraway Moore from her office. You probably already know this, but it was like being at home having coffee with old friends. That’s what I love about Mississippi; connections with good folks comes easy and the friends/connections in common are mind-blowing.
While we met with three of the five offices, all were asked to meet with us. Our message was clear with all three meetings: Please be our voice for needed change.
Our Legislative Priorities:
- Join our Congressional Task Force for Down Syndrome so Member and Staffers can be in the know about the needs for families like mine. Lead by Cathy McMorris Rogers.
- S.1183 Charlotte Woodward Organ Transplant Discrimination Prevention (Introduced while we were there. I will share more on this below.)
- Support the National Alzheimer’s Research Act (NAPA) Re-Authorization (Senator Wicker has already signed on)
- Sponsor/Support Transformation to Competitive Integrative Employment Act (End Subminimum Wage. States who already have changed subminimum wages: AK, CA, CO, DE, HI, ME, MD, NH, OR, RI, SC, TN, WA, and VA (new))
- Asking for Increased Funding for the INCLUDE Project at NIH with GLOBAL Down Syndrome Foundation (Needs more Republican Support)
CJ, Henley, Hudson and I attended these meetings with confidence in our message. Nick Leto with National Down Syndrome Society joined with us to share specifics on the policy changes sought. I believe we made a difference. Our asks are bipartisan good needed changes that reflect the want of our community. We matter. Hudson’s life matters. In one meeting we were asked what we see for Hudson’s future. I jokingly said that he will be the most amazing breakdancer this world has ever seen, but the serious answer is that we want to see him graduate high school with a diploma, not a certificate. We want him to have opportunities to go to college should he want to. Opportunities to be an active participant in his community. Have his own financial means to support the life he wants to live. What is possible is on Hudson; we just wish to support what he CAN DO, not always have conversations of what he can’t do.
As we were heading back to our end of Capitol Hill Day Reception with National Down Syndrome Society, we were met by friends. The news they shared were exactly why I advocate. It was both Charlotte Woodward and Bobbi Sarmiento walking hand in hand. They had been told that the U.S. House was introducing on the U.S. House Floor by Rep. Kat Cammack; and they got to be there for this beautiful moment. It had been introduced on the U.S. Senate Floor earlier in the week. Charlotte Woodward is our friend who works at NDSS. She was a recipient of a heart transplant and she happens to have Down syndrome. Her doctors didn’t discriminate and provided her a lifesaving transplant. S.1183 is named after her, still waiting on House Bill number. She wants to make sure that everyone has access to medical needs in the Down syndrome community. Bobbi Sarmiento is Baby Zions mom. Baby Zion was denied a heart transplant and sadly died at 4 months old. This sweet baby was solely denied because he was born with an extra chromosome. Bobbi was there to see that no more families suffer the way she has. This loss rocked our entire community and it has left us outraged that we are still seeing deadly discrimination today.
At the start of the reception, Congresswoman Kat Cammack, of Florida, came in the room. She was thrilled to share with everyone that she was the one to introduce the Charlotte Woodward Organ Transplant Discrimination Prevention Act. Thank you to U.S. Representative Kat Cammack, U.S. Senator Marco Rubio, U.S. Representative Debbie Wasserman Schultz, U.S. Representative Debbie Dingell. Rep. Cammack said she believes this will go all the way with 100% support from all. Bipartisan and good. Urge your U.S. Legislators to say YES!
Yes, we already have protections against discrimination here in Mississippi, known as Cole’s Law, The reason this is needed at the federal level is simple, the transplant list itself is a federal list and this should be a federal law. Many states have created different wording on this and a federal law would enforce this law be consistent across borders and create a practice that all must follow across all states. No misunderstanding of the law. What we have here in Mississippi was in Florida at time of Baby Zion’s death. Federal protections must be passed to protect our loved ones no matter where they live or who provides their health needs.
I feel like the biggest ask on the priorities list, solely based on cost, is the Transformation to Competitive Integrative Employment Act. This will take time, planning, and cost some money upfront, but, ultimately, it will save trillions and it’s just the right thing to do. The word itself, subminimum, for wages paid to most people with disabilities, is below minimum and it’s not even a real word. When a typical child wants to elevate education to maximize opportunities and job security, we encourage that the sky is the limit. When good paying opportunities with benefits, retirement and more are available, the person can then be independent of government supplements. We should invest in people with disabilities futures; find the abilities and maximize the level of independence. Transitioning should always be a focus. As long as there is room to grow and be better at any/all tasks, the goal should always be to seek enrichment to the best of that individuals personal abilities; the sky should be the limit for all. We must raise our expectations of our children with disabilities. An award was given to a documentary film maker this week. He followed a young lady who fought those who had stereotypes of her and Down syndrome. Each challenge she and her family faced, they met with “Challenge Accepted”. Everyone I have met on this journey has the same sentiment; don’t tell us what can’t be done, we will show you what can.
The “Alzheimers Research Inclusion” is a must. Something in the extra chromosome protects Hudson from developing a tumor, but the chance of developing Alzheimers is greater in our family with Down syndrome than the general population. By increasing access to diagnostic care and treatment, congress must ensure insurance coverage, such as at the Centers for Medicare and Medicaid, provides access to high-quality diagnostic care and treatment. We are also seeking portability of healthcare benefits across state lines. Alzheimers on the person is unfathomable, but we also know the heaviness on the caregivers. We are seeking to help better support caregivers, too; training, respite care, financial planning and accessibility of memory care and long-term care centers. Excellent, appropriate medical care is important for: length of life, quality of life, and allows a person with Down syndrome to reach their true potential. People with Down syndrome have a different disease spectrum and research is key to providing the care that is needed.
More beautiful moments from our trip were the Champions of Change Awards and dance party that followed. Two great friends of mine won awards. Both Courtney Gaines from Oklahoma and Jordan Burk with Kelly and Kelso from Texas took home trophies. They are both wonderful champions. Even without a trophy in my hand, I feel like a champion, too. You see, both recipients shared how important of a role I played in their success to be there that night as winners; Jordan even thanked me from the stage. I helped with the passing of Courtney’s Law (just like Hudson’s Law) in Oklahoma. I called lawmakers and held zoom meetings to see that Oklahoma protect our families along with Courtney’s mom, DeAnna. I am also a huge supporter of the Kelly and Kelso franchise. Jordan is moving huge mountains and I have had the pleasure of being a cheering mom figure for him as he opens new doors. I was nominated for this award, which is an honor, but the winners are people I have been cheering for all along… and that is a huge win for us all. And THE DANCING, the best. David DeSanctis was our DJ and the moves on the dance floor created the smiles that hurt in the best way. Hudson did some of his breakdancing moves on the stage and the party was a nonstop blast.
Just as we celebrate all of Hudson’s inch-stones, forward moving progress is a clear win. As you can see, it is time that the people we elect hear our needs and support our good bipartisan asks. The benefits will have ripple effects through our communities and across our country. Stop apologizing for behaviors that society deems unacceptable by our friends with disabilities; your child was born exactly who they were meant to be and society is who needs to change. Inclusion isn’t disability based or a case by case basis, it is meant for all.
My life is better because Hudson was born with his extra. My voice is stronger because of him. The friendships made, the education I have been given, the glasses I see through now, all better because of Down syndrome and the people who were born with it. Had God asked me if I wanted Hudson to have his extra, I would have likely said no because of the unknown for me. He didn’t ask, because He knew that Hudson’s extra is a gift to me and the world.
Whether you advocate like a mother, a father, a brother, a sister, a friend, know this:
- Good needed change comes when you are EXTRA bold!
- EXTRA loud people get heard and become the change we seek!
- The person who is your “why you’re an advocate” is EXTRA worthy of your voice, your time, and your energy!