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Crystal and Lucy Michael and Holly record a podcast.

Children denied lifesaving treatment due to disabilities

Lucy, a Minnesota native, was born with a condition called PMM2-CDG. It’s a rare disorder that has less than 900 diagnoses worldwide. When Lucy’s mother, Crystal, tried to get her on the transplant list, they were denied because of Lucy’s disability. Instead, Lucy was sent home on palliative care, where she would have died without a transplant. But thankfully, this story has a happier ending. (Hear the whole story at gtindependence. com/episode-02.) While Lucy’s story ended happily, this is often not the case. On October 8, 2021, Zion Sarmiento, an infant with Down Syndrome, died after being denied the heart transplant he needed to survive. This is a gross violation of human rights through eugenics. And it's only one story out of countless currently happening across the country. To learn more about Zion, follow his family’s group on Facebook, Zion’s Army. Or contact the National Down Syndrome Society.

Holly Carmichael, CEO of GT Independence, has a daughter named Maggie with PMM2-CDG, just like Lucy. Holly says, “This discrimination is not rare. This is happening all across the country. In fact, 85% of pediatric transplant centers consider a child's intellectual or developmental disability when factoring whether or not they qualify. They're making this judgment based on this child's perceived quality of life, what their contribution to society might be. The American Academy of Pediatrics came out with a policy statement, a paper clarifying heavily that this does not impact the success of the transplant or the health of the participant in any way, and it's downright wrong.” There is still time to stand up and end this violation of human rights. In fact, it’s possible for each one of us to make an incredible difference—all in less than 10 minutes. First, legislation must be passed that makes sure that this discrimination doesn't happen. In the last few years, half the states in the U.S. have passed legislation to prevent this discrimination. But 21 states still allow this violation of human rights. To take action on national legislation, call your representatives in Congress to support H.R. 1235. This is also called the Charlotte Woodward Organ Transplant Discrimination Prevention Act. The act prohibits disability-based discrimination to get an organ transplant.

Second, support the National Down Syndrome Society. They advocate for Down Syndrome throughout communities. They do this by focusing on areas of resource and support policy and advocacy, community, and engagement. They are doing a lot of work to pass this national bill. Visit their website (ndss.org) to offer your support.

Third, educate yourself. In the latest episode of the Disability Garrison Podcast, Holly Carmichael (CEO, GT Independence) and Michael Murray (CRO, GT Independence), discussed this issue alongside Crystal, Lucy’s mother. Listen to the 30-minute episode and hear the full story.

Michael Murray states, “Just like a garrison is a safe place where an army gathers, the Disability Garrison Podcast is a place for the army of disability rights advocates to gather and discuss complex issues. We are unafraid to identify problems in our world and have difficult conversations about them. But we are not just here to complain. We spend our time brainstorming solutions with generals in the disability rights movement. Together, we take action to make positive change and lead the fight for justice and equality.”

Join Holly and Michael on gtindependence.com/episode-02 and listen to Lucy’s story. Then take a look at all the ways you can take action in less than ten minutes. From calling your representative, to supporting the National Down Syndrome Society, to signing up to donate organs, there’s a way for everyone to make an incredible difference.

Visit gtindependence.com/episode-02 or Google “Disability Garrison Podcast” to take steps to end discrimination in transplants. For Lucy and Zion—let's make change happen.

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by James "Jimmy Wheels" Lovold

I’d like to call this 2019 Revisited. To me it's just another chapter in my life regarding the personal care assistant (PCA) shortage which I wrote about two years ago. Here's the continuation of the story. Just recently it happened again!

Another trip to south Minneapolis to what I call my Minneapolis home. This time it was because my one and only PCA was on vacation and there wasn't anyone else to come in and cover her hours. Here I go again, making arrangements with the transitional care unit for me to take up one of their beds, again. Something so very unnecessary.

My letter writing skills might have to come back into play, and send the governor another letter like I sent him before that. I'm guessing that he never read it. By the way, this last visit was one day short of a week.

The governor still needs to give the PCAs the money to do the job they do for us, the people that rely on the PCAs each and every day.

Because nothing has changed in the two years that I started writing about this, I've decided to go a different way. The Consumer-Directed Community Supports (CDCS) way! I'm hoping because of this change that I will be making will make a big difference. When I'm done I'll be able to hire and release people when needed.

Plus, here's the bonus, I hope, is that I'll be able to pay these PCAs what they're worth. That's my new chapter in 2019 REVISITED. Keep your eyes open for more writings. I don't think I'm done yet.

Editor’s note: And here is what Lovold wrote in 2019. At that time Gov. Tim Walz had observed a day in the life of a PCA, to put a spotlight on the challenges such workers face. The visit was followed by print and broadcast media, and by members of Minnesota’s disability community. The visit has drawn a mixed reaction from community members, with some saying they appreciate Walz’s efforts and others questioning if the event was simply for the cameras. The event was called “Walk a Day with an HHA” with HHA standing for home health aide.

Walz used the occasion to highlight the need for the state to invest in people with disabilities, and allow them to stay in their own homes. When Walz made his visit there were more than 8,000 job openings for home care workers.

Here are comments Lovold sent to WCCO-TV after seeing its report.

After seeing your story about the PCA situation, I decided I wanted to write an email to the governor telling him about my situation of lack of PCA services due to the fact that we have a PCA shortage going on seriously right now. All because of the pay!

PCAs can’t survive on what they make. I’ve spent half of this year in Minneapolis in a TCU or transitional care unit because of this situation. I also am a recipient of the PCA services. I’m a disabled man from birth who relies on these services every day of my life.

I thought you might like to hear another side of the story that doesn’t get talked about much. What happens to us when we don’t have the care in our homes?

Lovold lives in Oakdale.

James "Jimmy Wheels" Lovold and Amelio

Metropolitan Regional Arts Council works toward greater accessibility

by Scott Artley

Recently, I hosted an accessibility training for the Metropolitan Regional Arts Council (MRAC) staff. It was jam-packed with resources I had prepared in the last two years about things like preferred language for disability, how to host an accessible Zoom event, how to make an accessible document, where to find ASL interpreters, and more. In that meeting, for the first time in a while, I took a step back and saw how far MRAC has advanced its journey to better serve people with disabilities.

We’ve made a number of changes (big and small) in the last two years, but I want to highlight four specific steps forward in our accessibility journey that represent where we’re going:

Arts and disability community research - Through surveys, in-depth interviews, focus groups, and statistical analysis of past grantmaking, we dug deep into the community to determine where there were challenges and opportunities for MRAC to support the expanded participation of people with disabilities in the arts. While the pandemic changed our plans to develop new grant programs specifically for this work, the lessons that came out of this research and community engagement process brought insight and urgency to embedding accessibility in every aspect of our new programs.

Accessibility resources - My experience as an independent consultant before I joined MRAC showed me that accessibility resources are almost never targeted to small cultural organizations and their unique needs. I developed an access workbook and related training, a new do-it-yourself approach to addressing the Americans with Disabilities Act (ADA). This training is available on our Accessibility Resources for Arts Organizations page, along with a hefty list of resources for groups to begin tackling accessibility one concrete tactic at a time.

Alternative applications - Recognizing that our typical written application process in the online grant interface is inaccessible to some people with disabilities, we began accepting applications in alternative formats. For some, that meant filling out a Word document outside of our grant interface, and for others that meant working with an MRAC staff member to submit an audio application. We worked closely with each applicant and found solutions that were unique to their needs.

People with disabilities as decision-makers - Panelists are the heartbeat of MRAC’s grantmaking process. They represent the region and bring their expertise in the local arts community to help the board of directors make funding decisions. We increased the number and proportion of people with disabilities who served as panelists (11 percent in 2020), and offered new access services to panelists (like ASL interpretation for panel orientations).

We also engaged Cow Tipping Press, a creative writing organization, to pilot a new process that engaged panelists with developmental disabilities and neurodivergence. Applying their mission and experience to the panel process was a radical reimagining of how people with disability, often the stated beneficiaries of MRAC-funded projects, could be vested with the same decision-making powers as their peers.

Scott Artley is the MRAC accessibility program director.

Consider, mitigate disabling effects of LED lighting

Editor’s note: The first paragraph of this letter was garbled when the October issue was put together. It is printed in its correct form. We apologize for the error.

by Heidi O’Leary

There are 3.5 million people nationwide that suffer from epilepsy. For me, and for so many of us, we cannot tolerate LEDs, especially the strobing LEDs. They trigger grand mal seizures, headaches and nausea. They have been proven to be dangerous for the health of everyone.

Daily we are bombarded with seizure triggers: *LED car headlights and strobing brake lights *LED lighting in stores, offices, schools *Children’s toys containing flashing-colored LEDs *Bicycles with strobe lights *Trash, recycling and emergency vehicles *Gas pumps with small strobes to indicate where to insert your credit card

Many of us need to use incandescent light bulbs as opposed to LEDs in our homes because LEDs cause muscles to twitch and/or cause cluster headaches and nausea. We're scrambling around to stores everywhere to purchase as many incandescent as possible before they’re phased out. Because of these retailers using these bulbs, it’s getting more difficult to shop or eat like other people. It’s cutting short our rights. How can we even visit doctors’ offices? We’ve become prisoners in our own home.

There are no medications for this type of epilepsy. Even anti-seizure medications on the market cause light sensitivity. It’s disturbing to know these medications are being approved, when they aren’t truly helping, but harming.

I have reached out to senators, as well as Gov. Tim Walz and those in charge of the ADA, alerting them to the dangers of LEDs and how this is discrimination. I received a flippant response from the head of the U.S. Access Board.

The people who have been elected or assigned to help those with disabilities seem to be turning a deaf ear to our pleas.

I am currently giving my time to Soft Lights (www. softlights.org). It is an advocacy group dedicated to protecting civil rights of those with light sensitivity disabilities. This includes people with autism, epilepsy, lupus, PTSD etc. We are desperate, that these lights get changed and the strobes outlawed.

The invention of LED lights for illumination has dramatically changed the world in an incredibly short amount of time. Citizens and government leaders alike jumped at the chance to save energy.

We need your advocacy.

Heidi O’Leary lives in St. Paul.

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