9 Lollapalooza Tips for People with Disabilities

by Beth Finke

This weekend hundreds of thousands of music fans will descend upon Grant Park in Chicago for the much anticipated four-day Lollapalooza music festival. Featuring top billed acts and emerging artists, a variety of local food vendors, and a beautiful view of the city skyline, the festival is sure to have something for everyone. For festival goers with disabilities accessibility is key.

When I got in touch with Lollapalooza’s ADA Access Program Manager Cari Wieland before the festival, she shared some tips to help people with disabilities make the most of their four days here:

1. Use the accessible entrance closest to Buckingham Fountain;
2. Start off the festival by checking in at the Access Center on Columbus at Congress in front of Buckingham Fountain;
3. Ask at the Access Center for detailed information about viewing platforms available to anyone with mobility limitations. These are available on a first-come/first-served basis and are not limited to those who use wheelchairs;
4. Music fans with mobility issues may also bring one companion to these viewing areas. Make sure you (and your companion, if you’re bringing someone along) pick up a wristband at the Access Center allowing access to these areas;
5. Arrive early to the platforms, especially for any act you really want to see — they fill up quickly for the most popular acts;
6. Companions and patrons who are able to step off the platform and into the enclosed area are asked to give priority to those who use mobility devices/wheelchairs when the platforms are crowded;
7. Lollapalooza provides American Sign Language (ASL) interpreters at many of the stages, ask for details at the Access Center;
8. The festival schedule will also be available at the Access Center in Braille as well as large print when requested;
9. The Access Center also provides outlets to charge power wheelchairs when necessary.

Lollapalooza does not have ADA parking, but the festival does offer wheelchair accessible grounds and special designated festival entrances for people with disabilities.

You can read a full list of the festival’s accessibility accommodations at Lollapalooza’s web site.

Lollapalooza encourages any guest with a disability to contact access@lollapalooza.com with specific inquiries or requests.

Are you going to Lollapalooza or any other large music festival this summer? If so, share your experience and tips!

What the ADA Means in the Past, Present, and Future

by Beth Finke

A historical ADA campaign poster

Last Thursday Mary Schmich’s column in the Chicago Tribune introduced readers to the Grand Marshals of Chicago’s 2017 Disability Pride parade: Karen Tamley, Kevin Irvine, and their 11-year-old daughter Dominika. The column opened by explaining that the family is accustomed to getting stares.

“In an airport not long ago, a passing traveler, dragging a wheeled suitcase, did what many people do, which was to gawk at them while walking by.

The traveler stared first at Dominika, an 11-year- old who has grown up being asked what happened to her fingers and her face. The traveler then turned to inspect Dominika’s mother, who was using a wheelchair.

And then the distracted traveler walked straight into a concrete post.”

Dominika was born with Apert syndrome, a genetic disability characterized by facial differences and fused fingers and toes. Her mother, Karen Tamley, is the commissioner of the Chicago Mayor’s Office for People with Disabilities. She was born with a rare disability of the lower spine and uses a wheelchair. Dominika’s father, Kevin Irvine, has had HIV for 35 years and sometimes walks with a limp or with crutches due to complications from hemophilia or treatments for HIV.

The couple adopted Dominika when she was 5 months old, and the column said having disabled parents helps Dominika put her own disability into perspective. “I feel less self-conscious when I look at my mom,” young Dominika told Schmich.

Beth and her son, Gus, when he was a baby.

In some ways, I can relate to the family in this Chicago Tribune story. I got married in 1984 and started seeing spots in front of my eyes when Mike and I were on our honeymoon. Back home, eye specialists diagnosed retinopathy and scheduled me for eye surgery. I was 24 years old, I had a position at a major university, I was young and newly-married. I assumed the eye surgeries would work, and the spots would go away.

A year later, in 1985, I was completely blind. My contract was terminated, and I had no where to turn. I didn’t know of any other blind people with jobs. I supposed my boss was right. Blind people can’t work.

Our son Gus was born the next year with a rare genetic abnormality that had nothing at all to do with my blindness: Trisomy 12p. Specialist diagnosed him as “profoundly and severely handicapped,” but when he was still small enough to lie under blankets in a buggy, he looked like an average sleeping infant.

Back then I didn’t have the courage that Dominika and her family has. I’d fold up my white cane, hide it in Gus’ diaper bag and have Mike push the pram so we would look “normal.” I walked alongside with one hand near Mike’s on the handle. I wanted to look like other mothers, and I wanted Gus to look like other infants. I didn’t want anyone staring at us. I didn’t want anyone to know Gus and I were “handicapped.”

Gus was a year old when Senator Harkin of Iowa and Senator Lowell Weicker of Connecticut introduced the first version of the Americans with Disabilities Act (ADA). Disability advocates worked three long years to get the American public and the Congress to understand that discrimination on the basis of disability took many forms — myth, stereotype, fear — and that this discrimination was counter to our values as Americans. The hard work so many people put into getting this bill passed helped me come to understand that my urgency to hide the disabilities Gus and I had were also based on myth, stereotype and fear. Disability rights were civil rights.

A historical ADA campaign poster

Gus grew out of his buggy, and in 1989, the year he turned three, he transferred to a wheelchair and started school. In 1990, the year the ADA passed, Gus learned to propel his wheelchair himself. That same year I traveled on my own to Morristown, New Jersey to train with my first Seeing Eye dog. I learned to use a talking computer, too, and started writing. I’ve been moderating this Easterseals blog for a decade now, and I lead four different memoir-writing classes every week for older adults in Chicago. My third book, Writing Out Loud: What a Blind Teacher Learned from Leading a Memoir Class for seniors was published by Golden Alley Press just a few months ago.

Gus is 30 years old now. He lives in a group home near a park in a small-town neighborhood in Wisconsin where he attends a workshop with his three roommates every weekday. When we visit, Mike pushes Gus in his wheelchair to that nearby park, and I give my dog Whitney the “follow” command so we can take up the rear. I guess you could say we’re our own Disability Pride parade.

Mary Schmich’s Chicago Tribune story said that being this year’s co-grand marshal of the Chicago Disability Pride parade unsettled 11-year-old Dominika a bit. “I have mixed feelings,” she told Schmich. “I mean I like it, I like the idea of it, but…I feel self-conscious about it, marching and having people stare at you.” I know what she means. People still stare at us, too, and I still feel self-conscious about it.

Ever since the Americans with Disabilities Act passed, though, more and more people with disabilities are out in public. We’re on TV shows, in movies, at workplaces, in athletic events, at schools, on public buses, in big city parades and at neighborhood parks. People are getting used to having us around, and columnist Mary Schmich sees that as a good omen. “Maybe one day, by the time Dominika is old, the disabled won’t be so conspicuous,” she writes in her column’s conclusion. “In that future world, a traveler passing Dominika and her family in an airport might feel no need to stare, knowing that in the great and varied human species, that’s what people look like, that’s who families are.”

Join us for a Virtual Disability Pride Parade TODAY (7/26) to commemorate the 27th anniversary of the ADA!

Learn more about the Americans with Disabilities Act (ADA) and its impact

Philosophy, Love, and Autism: Conversations Between a Mom and Her Son

by Beth Finke

I am pleased to introduce Samantha Craft, author of Everyday Asperger’s, as a guest blogger today. This excerpt from her book speaks to her pride for her son, and having pride as a person with autism raising a child with autism.

You can also catch Samantha as a panelist on our #DisabilityInFocus Twitter chat TONIGHT, Thursday, July 20, at 6:00 p.m. CST. Join us in discussing how disability intersects all aspects of identity and culture. 

148. A Beautiful Morning with a Beautiful Mind

by Samantha Craft

The title of Samantha Craft’s book, Everyday Aspergers

My Aspie son and I have such deep and complex conversations that I swear he must be at least a thousand years old. He speaks philosophically, in a manner of viewing life that I have only discovered in the ancient wisdom of great scholars.

This morning, we spoke about truth, and the idea that when one threatens another’s truth by confrontation through disagreement or differing opinion, how the other naturally instinctually responds with a fight-or-flight nature. We opted for the agreement that this human response is based on human nature, on the idea of wanting to protect singular intelligence and mentality. I scaffolded upon the initial points, mentioning the concepts of limited and isolated perception based on the singular collection of reality from a limited scope of an individualized sensory input. He understood entirely.

I elaborated that I don’t hold a singular truth, as my truths vary vastly compared to how I interpreted my world five years prior, and that I am continually changing. He concurred and expressed that I had made sense.

Of course, most of this discussion was a dissertation on my son’s part. His theories of human communication and outcomes are right up there with the geniuses of our time. It amazes me that he is Aspie and yet years ahead of his peers in understanding the complexities of human nature and societal responses to multiple environmental stimuli.

I suppose I have taught him some by example, and he has sought out his own form of awareness and truth through observation of others and the intake of literature and films; however, the intricate ways in which he pieces the found knowledge into linear, detailed outcomes and conclusions is awe-inspiring. If ever an old soul exists, I see this as my son.

When I offer a gentle reminder to him (at any time and in any genre of conversation) to please remember to keep in mind that he views the world a bit differently than others and that he and I have complex ways of interpreting events, he responds ever so humbly, consistently reminding me that he does not enjoy the comfort of setting himself above or beyond anyone else, and that all can see and comprehend as he does, but perhaps they do not understand what they are doing or in some way do not observe the connections.

He is insistent that his way is no better and that he is not superior by any means; to sit with the idea of being special is a great discomfort to him. And though my son may appear aloof, argumentative, and at the edge of his seat ready to engage in debate, he is a wise sage at heart, insistent upon remaining humble. A concept I did not set out to instruct upon him, but one he shares with me.

I am continually fascinated by his mind. He grows in spurts that are “unnaturally” fast, comprehending and taking in and retaining more than any student I have ever witnessed. He reworks ideas in his mind to match his view of reality, a view that is extremely open-minded whilst being seemingly narrow-minded.

I mean to say that, to the typical observer, he comes across as strongly opinionated and limited in his viewpoints, but given the time for careful analysis, he is actually extremely open to reasonable and logical ideas that don’t initially resonate as truth with him. And, in fact, he will easily dislodge a chosen truth for a new truth after taking in what another has shared.

The barrier that exists between him and his peers (and some adults) appears to be that exact fight-or-flight mentality my son was theorizing upon. He speaks, and if another interprets him as threatening to any degree, then the other shuts my son down or out, no longer hearing what he is stating and instead closing off possible connection.

We were weaving out of conversation this morning, and I found myself going down an interesting course. I had started a sentence several times, never truly completing the string of words, as my son was interjecting (albeit while apologizing for doing so) with his rapid-fire thoughts and connections. I enjoy the way he is ignited with ideas and take no offense to his interruptions. I see a lot of myself in him, and him in me.

I was trying to explain something to my son. At first, I thought I was clear on my idea, but something inside of me self-corrected in the middle of my thought process. I was speaking aloud. I had thought of the isolating factor of Aspergers, how we are so often misunderstood and ostracized. And, on hearing my son talk so freely and blatantly, I imagined how this exact discourse might bring him further out of his collective circle of peers. I began to speak from fear, but didn’t recognize what I was doing until most of the words were out of my mouth. “As you get older, son, I think it would be beneficial if you monitored some of what . . .”

The words came through at last as one cohesive thread, and with that outpour, I had time to recollect what I had shared. I immediately backtracked. “You know what? I have changed my mind,” I shared. “I was originally thinking that you should be more careful around people who don’t accept you unconditionally, so that you don’t live an isolated life. But I disagree with this. I think you should be exactly you, and that people will love you for you.”

We sidetracked for a bit to explore the concept of unconditional love. He didn’t understand the idea of choosing not to have someone in your life but choosing to still love them unconditionally, e.g., to hold them in love and light, to pray or keep them in thought, to hold no ill will or resentment toward the individual and wish the person the very best.

He seemed to be taking in a lot more than I was saying.

My son looked at me and gave me a sheepishly wise grin. I knew that he knew. And we continued onward, back to the previous conversation. I stated, “I mean, I tried the other way for years. To pretend and hold back myself, and I was miserable. Why would I want that for you? I just want you to be free to be you, and others to appreciate you for who you are.”

He answered. “I know. I thought you might change your mind, once you said it. You realized you were contradicting yourself before you were finished. That is clear. I understand.”

I smiled, still in disbelief at the level of this young man’s ability to comprehend others’ thought processes. I added, “I guess I just wish as you grow older that you can focus on being less injurious, if that makes sense. What I mean is there is a difference between choosing to say something that you are highly certain will hurt someone’s feelings, and saying something that unintentionally hurts someone. If you are injurious, it will be harder to maintain friends. Does that make sense?”

“Yes,” he said. “And I already do that, Mom. Don’t worry. I understand.”

We talked further about the complexities of human communication and the limitations based on others’ interpretations and emotional responses. As we approached the school, he looked at me and responded, “Thank you for such intriguing conversation.” He nodded, sounding much like the little professor I have grown to adore in astonishing amounts. “It was quite a good conversation.” I half expected him to add “indeed” to the end of his last statement. His voice was monotone, without hints of rejoice; he made no eye contact, and he mostly huffed away as I said, “Enjoy your day, sweetie pie.” But I knew how he felt.

We’d connected at an intellectual level without judgment, without expectation, and with equally open minds and acceptance. It was another freeing moment, the way in which the two of us communicate, this unabashed arena in which anything said is okay and doesn’t affect the other’s equilibrium or sense of self or worth.

It was a beautiful morning, indeed.

Learn more about tonight’s #DisabilityInFocus Twitter chat where Samantha will be a panelist

Empowered and Disabled: Why I Don’t Like ‘Special Needs’

by Erin Hawley

Erin Hawley

After reading Ellen’s post on the Love That Max blog about her son Max’s declaration that he does not have “special needs,” I thought about my journey with identification and how it changed over the years.

Growing up in the 80s and early 90s, I never even considered myself disabled. I knew I was different, but to me, disability was something those other kids on TV had – the kids on telethons wishing for another body or being isolated from friends and family. That wasn’t me at all. My family loved, accepted, and cared for me. I had a large circle of friends at school that I hung out with regularly, and they treated me as an equal peer. At the time, I didn’t realize the privileges that led to live that sort of life. So I disregarded any attempt to categorize me as something I only associated with pity and sadness.

Media skewed my view of disability, and those stereotypes were difficult to unlearn. In high school, I began to see that disability is not about shame. Through talking with other crips (a term we have reclaimed), and being involved in the disability community thanks to the internet, I now envision disability as something powerful. No longer do I skirt the term “disabled,” but I wear it proudly like a badge of honor. When I have bad days that test my resolve, that threaten to dislocate me from the comfort of my own skin, I turn again to my fellow disabled friends and partner for support. We hold each other up — not always perfectly, but enough to keep going. We see this support and proud declaration of disability across the United States now, in protests against Medicaid cuts. Crips are spectacular and beautiful and prevailing.

Like Max, I think the term “special needs” doesn’t fit us. Kudos to Ellen for recognizing her son’s wishes, and respecting his desire to avoid that term. I’m in my mid-thirties, so I’ve come a long way since elementary school or middle school, where that term was used frequently. When I think of disabled people, the community Max and I both belong to, I don’t see our needs as special. They are normal, the same as abled people’s needs. We all have to eat, sleep, toilet, have social lives, and receive healthcare. Disabled people may go about these things in unique ways, but the core need is all the same; the difference is that the government or other systems routinely exclude us and cut services we desperately need. So we keep fighting.

It took me a while to accept my definition of disabled. It took me a while to understand why “special needs” and “person with a disability” bothered me. Max is also exploring these terms, figuring out how to define himself, and I think that’s a great thing to do. It’s also difficult, and I imagine his feelings will change as time goes on — just like it has for me. I accept that my opinion on terminology will evolve again; the learning and growing process does not end, nor should it. But, regardless of what I choose, I will always be proud to be me.

Join Easterseals National and Easterseals Thrive on July 20th at 7pm EST for a live Twitter chat on disability pride! Learn more at our website.

4 Ways to Oppose Cuts and Caps to Medicaid

by Bridget Hayman

22 million.

That’s how many people could lose health insurance over the next decade if the Better Care Reconciliation Act passes the Senate and is signed into law by President Trump.

To put that into perspective, 22 million is roughly the combined population of the seven largest cities in the United States.

For nearly the entirety of 2017 healthcare has been a topic of national conversation. Preexisting conditions and essential health benefits have been discussed fervently among friends, families, and strangers online.

At Easterseals, we’ve focused on protecting  Medicaid, which is vital to the people we serve, along with their families, giving them access the community-based services they need.

Healthcare is complex, but the truth is simple: Everyone deserves affordable and equitable access to services that help them thrive and live independently.  Being an advocate for Medicaid is something anyone can do. Here are some ways to get started:

1. Learn the facts: Be a champion for Medicaid by building a solid foundation of understanding. After all, to combat falsehoods it’s important to come armed with the facts.
2. Contact your senators: Your representatives were elected to represent you! One of the most important ways to oppose cuts and caps to Medicaid is by voicing your concern to the senators in your state. Don’t know what to say? We made a call script with additional talking points and included the contact information for the senators in your state.
3. Share stories: People with disabilities and their families from nearly all 50 states have shared their stories with us about the difference Medicaid-funded services have made in their lives, and what would happen if those services went away. Take some time to read and share these stories.
4. Spread the word: It doesn’t take long to become overwhelmed by the constant breaking news updates flooding your various social media feeds. But if you can reach even one person and make them consider how important Medicaid is and how detrimental cuts and caps would be to millions, then it’s worth it. Encourage others to learn, call, and share. It doesn’t have to be in that order, but it should be done with empathy and understanding.

To those who have been active and loud voices on behalf of Medicaid, your work has made a difference.

As Senator Bob Casey said in a recent call to our offices, “We’ll be fighting and fighting until the end.”

Share with us in the comments below or on social media how you’re joining the fight against cuts and caps to Medicaid. And don’t forget to visit Easterseals.com/ProtectServices to get involved!

What is the Difference Between Help and Support?

by Sydney Palese

Today’s guest blogger is Peg Grafwallner, M.Ed., introduced to us by Bob Glowacki, CEO of Easterseals Southeast Wisconsin. Peg is an Instructional Coach/Reading Specialist in Milwaukee, as well as a blogger, author, and national presenter. 

I am an Instructional Coach and Reading Specialist at a large urban high school.

I am also Ani’s mom.

Ani is autistic and intellectually disabled. According to the National Autism Center, “Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by deficits in social interactions and social communication and by restricted, repetitive patterns of behavior.” If you ask Ani what autism is, she’ll tell you she gets confused.

I brought Ani home from a Bulgarian orphanage when she was five years, 11 months. Her mind and body suffered greatly. She weighed 23 lbs., had no language, was not potty trained, and focused on bizarre hand movements. It was clear she had had no mental or physical stimulation. When I met her for the first time, she sat under a shelf and rocked back and forth – endlessly.

But the one thing that kept going, that never diminished was her spirit. Through all of the heart-wrenching sorrow within the first several years of her life, she has kept her indomitable spirit.

As a parent of a Special Needs child and as a teacher in a large urban school district, I have a unique perspective. I see many parents who “help” their children and as a result, they do their children a great disservice. They immediately fly into the “I don’t want to see you suffer, so I will gladly do this for you” (because sometimes that’s what “help” looks like) mode every time they smell calamity or perceive that things have become too “hard.” Heaven forbid life gets tough.

Instead of helping, let’s focus on support. There is a difference.

What does help look like and what does support look like when we are talking about my Ani or perhaps, other special education students?

It looks like it does for any other kid.

First, don’t feel sorry for Ani. She’ll never need your sympathy and she’ll never need your help. She’ll need your support. As an example, at home, we could give Ani the space and time to practice a skill. At school, however, Ani was the only student that required assistance and time was of the essence so there might not have been the luxury of practice. Therefore, I would ask Ani’s teachers what specific skill they were working on at school that we could practice at home. Sometimes, Ani would practice using a scissors cutting along thick, black lines; sometimes she would trace shapes to practice holding a pencil. Whatever it was, it had to be simplistic and basic – something that wouldn’t cause anxiety or a loss of patience for mother or daughter.

Second, there’s your way and Ani’s way. It will probably never look the same, and that has to be okay. When Ani was about 10 years old, Max, her brother, asked her to make two peanut butter and jelly sandwiches for him to eat after the football game. As he sat on the bus, eager to eat his snack, he opened the bag and took out one of the sandwiches. He took a big bite and stopped. Peanut butter, no jelly. Ani had made a peanut butter sandwich. He took out the other one and opened the two slices of bread. Sure enough, jelly. Ani had indeed made two peanut butter AND jelly sandwiches, her way. To this day, that incident remains one of his favorite high school memories. His friends noticed what happened and laughed good-naturedly.

Finally, and most important of all, have high expectations for any child – including mine. At the beginning of third grade, Ani had learned to tie her shoes. However, I neglected to tell her teacher. One day, I picked her up from school and her teacher thanked me for teaching Ani how to tie her shoes.

Apparently, Ani would go up to her teacher or some unsuspecting classmate, stick her foot out with untied laces and look forlorn (another way to ask for help!). The naive innocent would bend over and tie Ani’s shoes. When the teacher told me what Ani had done, I almost burst my buttons with pride. My daughter, the one who couldn’t cut a straight line with a pair of scissors, who couldn’t trace the shapes on the paper, who couldn’t regulate her finger movements had manipulated them all. Instead of the teacher and her classmates supporting her, they helped her and she took full advantage of it.

So what does this tell us? Support her as you would support any other child. Don’t do it for her and don’t feel sorry for her. She might surprise you. Ani’s way works for her. It might take time and you might do it differently. But, that has to be okay. Finally, remember even though she might be labeled “special needs,” she is as special as any other child – with all the manipulative behavior that all of us own.

Ani is an inspirational, intelligent and involved young woman. She is a star athlete immersed with Special Olympics and is one of the Wisconsin Ambassadors for Best Buddies. Today, she is a lab technician at our local pediatric hospital. Her warm personality and honest disposition are genuine and true. She is no longer the “little orphan” that I brought home from Bulgaria 16 years ago; on the contrary, she is a mover and shaker who continues to surprise us and those around her on a daily basis.

I remember many years ago bemoaning Ani’s future. How would it look? What would she do? Who could I count on? Ani’s art teacher, a special needs parent herself, encouraged me to take one day at a time and that when the time came, I could rely on the “natural support” within the community. She was right. The natural support has revealed itself at Ani’s work, in Ani’s social life, and in Ani’s hobbies. And the expectations remain high.

Read the original article from Peg here

Visit Peg’s website to learn more

Service Dogs Deserve Vacations, Too

by Beth Finke

They help us around obstacles. They prevent us from falling down stairs. They pull us back when cars speed through red lights. And if that’s not enough, Seeing Eye dogs bring us other fringe benefits, too.

I’m writing today from a little inn in Lubec, Maine – I’ve taken a few days away to attend the Iota: The Conference of Short Prose at Roosevelt Campobello International Park.

Whitney got to lay across the row instead of scrunching under one seat.

A worker at our gate at O’Hare was so taken by my Seeing Eye dog that she gave me and Whitney our own two seats. “That way she can stretch out.” And I could, too!

At the Bangor Airport in Maine a rental car worker upgraded my husband to an SUV. “That’ll be nice for the dog.”

It was nice for us, too. With my window down I could take in the clean air and breathe in the fragrance of pine trees — Whitney’s nose was twitching a mile a minute, too.

Whitney had eaten on the plane (I measure her dog food out into ziplock-bag-portions at home to bring along on trips) but Mike and I were starving. En route from Bangor to Lubec he caught sight of a roadside trailer selling lobster rolls. We stopped for lunch, and the guy taking food orders there provided us with our first taste of that marvelous Maine accent. “Does yah dahg wahn ice cream?”

Seeing Eye dogs aren’t allowed to eat anything but dog food. Dogs who eat leftover scraps tend to get overweight, and guide dogs need to stay trim to do their work. Eating food intended for people can make dogs sick, which is sad for the dog and difficult for the blind person who needs them in order to get around safely.

”I cahn’t heah ya ovah thayah,” the guy inside the roadside trailer called out. “He shuah looks hungry, does yah dahg wahn ice cream? Free fah ahl dahgs.”

Ah, well. Whitney is on vacation too, right? “Shuah,” I said. Whitney ate it up — she thought the ice cream was supah.

“We took a breath this long weekend, but we know we can’t get complacent”

by Beth Finke

Huge thanks to all of you who read my husband Mike Knezovich’s post about the potential changes to Medicaid and forwarded it on to others and/or commented to it on social media. We are especially grateful to those of you who contacted your legislators.

Senate Majority Leader Mitch McConnell (R-KY) delayed the vote on the Better Care Reconciliation Act (BCRA) until after the July 4th recess, and with Congress taking a break now, Mike and I decided we could take one, too. We headed to Wisconsin to visit the young man you all read about in Mike’s post.

Staff at Gus’ group home had him all freshened up and ready in his wheelchair when we arrived, and our son greeted us with a mischievous laugh and a clap of his hands. A reaction to the news about the Senate delaying the vote? More likely in anticipation of the trip we were about to take.

Mike the Pied Piper pushed Gus in his wheelchair with Whitney the Seeing Eye dog and me following close behind. Our destination? The picnic table in the park across the street. Not a whole lot of kids out at the park Friday, so we were able to let Whitney off her harness for a while. She chased a ball while Mike and I talked and sang and laughed…with Gus.

So we took a breath this long weekend, but we know we can’t get complacent — we’re not out of the woods yet.

You can check out this Medicaid fact sheet to learn more about the Senate health care bill. Then join Mike and me and tell the U.S. Senate: No Cuts, No Caps to Medicaid. Call your state senators to oppose the cuts and caps to Medicaid using this call script with additional talking points. If your Senator has already said they won’t support the bill, thank them and ask them to hold firm on their stance — this form helps you find your Senator simply by filling in your zip code.

The Difference Medicaid Makes for My Family

by Beth Finke

Here’s another guest post about how changes in Medicaid could affect the people we love and care about. This one is written by my husband, Mike Knezovich.

by Mike Knezovich

Meet Gus, our son.

Our little man with his mom.

He’s 30. He laughs heartily when I sing to him in a Louis Armstrong voice. He loves music, especially stuff that has unusual rhythms—Prince is a favorite. He doesn’t seem to be able to see very well straight ahead, but he manages with his peripheral vision. And he knows Beth’s voice and my bearded face.

He can’t talk. He can kinda’ walk with assistance. And he wears diapers. He lives in a group home in Watertown, Wisconsin.
Gus was born with a genetic anomaly called trisomy 12-p. Pretty rare. The only literature we found at the time said he was unlikely to reach age 30. But he did. I’m proud of him. And of us. And of my fellow Americans who made it possible.

By the time Gus reached age 16 he was mobile and strong enough for it to be a safety issue for him and for us. We were lucky to find Bethesda Lutheran Communities. It’s a religiously affiliated non-profit that runs the group home our son lives in. It gets donations. But it can’t do what it does without help from the broader community—like Medicaid and other programs.

Gus needs help with everything. And he gets it. From salt-of-the-earth-people who make, essentially, the minimum wage. Medicaid helps pay for that. But barely enough. Bethesda is in the midst of financial struggles, as are lots of such agencies across the country.

Gus gets medical care from providers who accept Medicaid. It’s hard finding providers in some fields—like dentistry—but overall, compared to a couple of his housemates, he’s fortunate to not need a lot of specialists’ care.

I want you to trust me on this. I’m a pretty smart person. I love my son. I’ve watched closely. No one’s getting rich off of others’ labors in this equation.

Gus is served by a Wisconsin program called Family Care, which is essentially a kind of HMO for people like him. Family Care administers Medicaid funds and pays the group home operators, and oversees the operators, and looks after Gus’ care, and communicates with us about his health and any behavioral issues. Family Care does a very good job. We always hear pronto from Sarah, who’s a lead at the home where he lives, if anything is amiss with Gus.

Beth and I have always worked. We’ve paid a lot of taxes. But even if we were totally frugal, we couldn’t cover the cost of Gus’ care. And though we’re both sort of healthy, we haven’t been able to provide that care directly for a long while now.

I’ve worked at non-profits, at government-supported institutions of higher education, at startups, and at Fortune 500 companies. I’m here to tell you, they’re all a mess. They’re a collection of humans being humanly clumsy. They all rely on enough people trying to do the right thing. If not enough of those people are in the right places at the right time trying to do the right thing, failures ensue. Government. Private sector. Doesn’t matter.

There are worthwhile discussions to be had about the devils in the details of programs like Medicaid, Medicare, etc. I’m not a rigid ideologue. Everything can work better than it does.

But we’re not having that discussion anymore.

Awhile back I wrote an essay about how when bad things happen you can feel pretty alone. And about the value of understanding that you’re not.

Right now I’m feeling pretty alone. So are a boatload of other people.

I hope you’ll speak up and prove us wrong.

Join us in telling the U.S. Senate: No Cuts, No Caps to Medicaid. Start by calling your state senators to oppose the cuts and caps to Medicaid using our call script with additional talking points. Share stories, like this one, that show the impact of Medicaid on people with disabilities and their families. Also be sure to check out our Medicaid hub to learn more about the Senate health care bill.

How I Answer “How Was Your Father’s Day?”

by Beth Finke

Last week we published a very powerful post by guest blogger Keith Hammond about how kids who have disabilities will lose out if proposals to cut Medicaid leave American schools unable to get reimbursed for the costs of providing a free and appropriate public education. Sunday was Father’s Day, and Keith is back with a poignant guest blog about celebrating the holiday — or not.

Keith and his kids, Hillary (left) and Steven (right)

by Keith Hammond

When you have two children with autism, holidays can like Father’s Day can be hard. Children with autism largely benefit from specific and predictable schedules, and holidays disrupt those routines. Traditional places in the routine (school or various fast food establishments, for example) are often closed. Holidays involve strange expectations — spending time with people who aren’t familiar, visiting new locales, eating unknown foods — and they often involve rituals that can be loud and anxiety-producing (Don’t even get me started on fireworks).

And so, with all the celebrating that took place over the weekend, you might wonder what Father’s Day is like when you have children with autism.

Well, it’s…different.

The best I can do is share a recent example to illustrate. I’m needed at home at night for my son Steven’s evening medicines, his shower, and getting him to bed. Steven also needs me on weekends when his time is unstructured. So, when I want to spend time with my own dad — something most men wouldn’t have to worry about — I need to take a day off work.

So that’s what I did a couple weeks ago. I took a vacation day to take my father out to a movie while my son Steven was at school.

My dad and I share interest in James Bond and Marvel movies, so we ended up at a matinee performance of Guardians of the Galaxy II. We saw the first Guardians movie together back in 2014, and my dad loved Rocket Raccoon. So we were back for the sequel. It did not disappoint.

Part of the plot of the movie involves the leader of the Guardians, Star-Lord, being introduced to a father he has never met. This father, Ego, finds Star-Lord, and they are transported to Ego’s planet where the pair hope to get acquainted. It’s a bit of a rough go at first, but in a tender moment evocative of Kevin Costner’s Field of Dreams, Star-Lord and Ego play catch with a ball. The scene signifies that the two of them are bonding as father and son.

For many in the audience, this poignant scene evokes memories of playing catch with their fathers and the good times of days past. Since I was there with my father, it did bring back some very fine feelings of nostalgia.

But then, my thoughts turned to myself and my son, Steven. We’ve never tossed a ball like that. We certainly tried, but due to some of his special needs, it’s hard for him to catch, and even harder for him to throw.

So there I am, sitting in a movie theater, watching Star-Lord and his father laughing and playing catch, and it hits me: that will never be me and my son.

The tears began to fall.

Thankfully, the scene eventually switched back to the talking raccoon shooting the place up and making jokes! That broke the mood, and it all became good, clean fun again.

There’s a saying in the autism world: “What screws us up most in life is the picture in our head of how it is supposed to be.” Holidays tend to be large reminders of how it is supposed to be, and for me, Father’s Day in particular never lives up to its expectations. I hear what others are doing that day. I see their smiling father-and-son pictures on Facebook: trips to the ballpark or to nice restaurants. Many of these folks are my friends, and I try to be happy for all of them.

Certainly, I do love my children just how they are. Still, something goes on in the back of my mind that leaves me wondering. Why can’t it be like that for us, for Steven and me? Does there have to be a special day to point out how different we are? Why?

These of course are questions that may never be answered. The holiday is over, and I’m back at work, back to being busy with life, the chores, and my children. Inevitably someone will ask, “Did you enjoy your Father’s Day?”

All I can do is smile and say, “It was just fine, thanks.”

Read more stories from Keith Hammond about being a dad to two kids with autism:

Here’s Who Loses Out if Medicaid Funding is Cut

What a Broken iPad Taught One Dad About Parenting