little girl in wheelchair playing basketball

How Obamacare Saved My Daughter

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Losing the Affordable Care Act would be devastating for my family. Without it, my daughter would most likely be dead.

At a mere two weeks of age, Namine needed heart surgery. At six months, she needed heart surgery again. She required much early in life — in terms of medical procedures, as well as equipment — and she was not the independent, thriving child she is today. She had a tracheostomy, a stomach feeding tube (known as a g-tube), and more equipment than any uninitiated parent would know what to do with. (I mean that literally; my wife and I went through actual medical training before we were allowed to bring our daughter home after several months in the hospital.)

I have private insurance through my job. It had a cap of $2 million, and Namine — with her as of yet indefinite stay in the hospital, plus surgeries, scans, and doctor consults — was fast approaching that cap. And then when I received a phone call from my insurance that informed me the cap was being lowered to $1.5 million, I didn’t know what we would do. Namine would obviously be dropped, and then what?

It was fortuitous that the Affordable Care Act went into effect when it did because suddenly, miraculously, Namine had coverage again. There were two results, from which we as a family benefited. First was the fact that my private insurance could no longer put a cap on any of us, meaning Namine was back on my plan. The second result was that Namine had state insurance — Medicaid — which covered everything my private insurance did not. As long as she was considered disabled, she would always be covered*.

The end result of Namine being covered by the ACA was that no matter what procedures she needed — and she has needed a lot over the past seven years — of all our worries, that she would not be able to have any of them was never one. That, to me, was always the point of the ACA: You’ve got enough to worry about. Let us take care of the bill, while you take care of your loved one.

*Being “considered disabled” is really more complex than you’d think, even for Namine, who needs a wheelchair on a daily basis. There are also other qualifiers (and ways to get denied) and other fights to be fought regarding insurance. But that’s a different discussion for another blog post.

This article was originally published on eichefam.net.

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Talking About Disability With Able-Bodied Children

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A huge part of creating an inclusive, supporting environment for children with disabilities is making sure their peers are in the know about how disability works. My grandson, Elijah, lives with cerebral palsy, and it’s important he grows up around adults and peers who cherish him as a person, not as a pet or a project. I want everyone Elijah interacts with to be mindful of his limitations and cherish him for the fun little boy he is.

You may initially feel uncomfortable talking with a young child about a classmate in a wheelchair or a classmate with learning differences, but creating a world more receptive to people with differences starts with young people. Rather than teaching a child to ignore a person with a disability, or worse yet, treat a person with a disability condescendingly, here are some ways you can talk about disability in a way that encourages interaction and acceptance.

Address the difference.

Children are naturally curious and may stare, gawk, or point at peers who have obvious physical differences. Use the opportunity to educate on disability, not bury the topic. When children are taught to “ignore” disability, they neglect the importance of inclusion. Teach them to embrace differences, ask questions, and engage with people who are different.

Talk straight with your child.

Use names for devices and briefly sum up their purpose. For example, if your child is curious about a person with an oxygen tank, explain plainly and without emotion or speculation the person may need some extra help breathing, so they use the tank to help. Using appropriate and respectful words to describe disability will instill respect in your child. Some words are offensive, such as, “crippled,” “retarded” or “deformed.” Instead, teach words like, “different” or “disabled” to ensure acceptance rather than condescension.

Point out similarities.

Rather than dwelling on how children with disabilities are different from able-bodied children, talk about the ways all children are similar. Children like to have friends, play games, form opinions, pet puppies, watch movies and other common activities. Spending time on similarities reinforces inclusion, acceptance, and empathy. Immediately discourage bullying or jokes; children with disabilities are commonly considered “easy targets” for verbal abuse.

Point out what is hurtful.

Tell your child it would be hurtful if someone teased them for something uncontrollable — such as their hair color or name — so it’s not nice to do it to someone who has a disability. Your main thesis when discussing disability with your child should be that, no matter a child’s condition, they’re still a person who deserves respect and acceptance.

Model respect.

Taking the time to teach and model respect towards people with disabilities will help develop the same attributes in children, reduce bullying, and create an inclusive culture that benefits both able-bodied people and those with disabilities.

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To Donald Trump: Please Don't Value Money More Than People With Disabilities

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Dear President Trump,

Congratulations on your recent presidential election. You are now the leader of the United States and you have the made the promise to unite the country. I am writing to you today to help you do this. I believe our policies will deeply affect individuals with disabilities in an unfortunate way — specifically, the AHCA and the policies being promoted by Secretary of Education Betsy DeVos.

Before I begin, please let me introduce myself. I am an individual with cerebral palsy. If you are not aware, cerebral palsy is a physical and developmental disability that affects your muscle and motor movements. I was diagnosed at the age of 5 months and the doctors gave my parents the prognosis that I would never be able to walk, talk, or live independently. Today, not only can I walk and talk, but I also live in my own apartment, graduated with a bachelor’s degree, and now attend law school. Although I am very fortunate with the opportunities and progress I have achieved, they have not come without struggle.

President Trump, I am not sure if you are aware, but disabilities are equal opportunity. Disability does not look at social or economic status, and it can affect anyone at any time. Disabilities are often expensive and costly, requiring a variety of treatments and adaptations. Growing up, my parents were by no means in the one percent. My parents were married at the age of 19. By the time, they were 23, they not only had a 3-year-old, but also an infant who was diagnosed with a developmental disability. At the time, my mother was a health care aide and my father worked at the local lumberyard. Their lives altered drastically once I started making regular visits to the hospitals.

Over five years, I underwent nine major surgeries where the doctors rotated my bones and muscles to help me walk on my own. Additionally, for the first 12 years of my life, I went to physical, speech, and occupational therapy for three days a week, each. Needless to say, the hospital became my second home. My parents also had to purchase adaptive equipment for me, such as a wheelchair and walker. On my parents’ salaries, they would not have been able to afford all of my medical needs if it weren’t for Medicaid. These government funds allowed me to get the treatment I needed to reach my full potential.

At the age of 26, I am once again on Medicaid as I cannot afford a private healthcare plan that will cover all the treatments I may need. President Trump, by putting a cap on a state’s Medicaid funding, you are putting limits on access to health care for individuals with disabilities. Medicaid may be the only way people with disabilities can afford the healthcare they need. Your intention may be to cut the country’s deficit, however, to what extent is a dollar sign more important than a person’s healthcare?

Your policies not only limit access to healthcare for people with disabilities, but you are also limiting their access to education. Your nomination of Betsy DeVos is deeply troubling to me as someone who has spent most of their educational career in special education. I worry about Ms. DeVos’s advocacy for school choice and voucher programs, but I’m more concerned about her lack of knowledge of the federal law Individuals With Disabilities Education Act (IDEA). When I was not in the hospital, I attended a public elementary school until fourth grade. During that time, I was on an individualized education plan (IEP) that gave me extra support to learn. In fourth grade, my parents decided to take me out of the public-school system after my teacher told my mom that I was “too stupid to understand, and a waste of her time.”

I was then enrolled in a private Catholic school. While this school allowed me to establish more genuine friendships, I did not receive special education services. IDEA, does not extend to private schools, and therefore, they are not obligated to offer special education. This caused my teacher to take time away from my classmates so he could properly address my educational needs.

After a few years in private education, my parents moved me back to the public education system. I was again put on an IEP, and gained services such as one-on-one support and extra study time. Special education allowed me to be fully included in the classroom and to reach my true academic potential. I graduated from high school with a 3.6 GPA, went on to graduate from college with a dual degree in theology and peace studies, and was accepted into law school. This summer, I have accepted an offer to work at one of the world’s most prestigious law firms as a summer associate. None of this would have been achievable if I had not been able to gain the study skills and learning tools I needed through special education. Special education services are vital to the education of those with disabilities.

President Trump, Secretary of Education Betsy DeVos does not understand the federal rights that are given to students with disabilities. Furthermore, pushing for the privatization of education (which I believe to be the underlying aim of school choice) will create an educational and social divide at the expense of students with disabilities. This will push society back to the time when individuals with disabilities were not fully included in society and were looked down upon.

Not every student has the luxury of being able to choose a school that is the best of the best. Students with disabilities may lose their right to a free appropriate education. Students with disabilities are students, and they too deserve the right to prosper and reach their full educational potential. Your intention may be to privatize education, but when does a buck become more important than an individual’s civil rights?

President Trump, you are in a great position. A position many young boys and girls aspire to hold one day. You represent every male and female, every immigrant, every homeless and rich person, and every person with a disability. You represent every U.S. citizen in this great country. We, the citizens of the U.S., look to you to uphold our individual and civil rights. I encourage you to look at every struggle imaginable that any U.S. citizen could face. To what extent is a dollar more valuable than the health, happiness, and prosperity of a person? I hope your answer is that the latter is so much greater than any amount of money.

Sincerely,

Danielle Liebl

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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The Light I See in These Dark Times for People With Disabilities

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We are living in a scary time. This seems to be the conclusion of so many conversations I’ve had lately with various people from diverse political viewpoints. While obviously not everyone shares this perspective, those of us who live and/or work with more vulnerable populations, such as children and adults with disabilities can’t seem to avoid such conversations on a regular basis. To me there is no doubt that the current administration does not place the same emphasis on civil rights as its predecessors, both in terms of protecting current rights and pushing to expand those rights when necessary.

However, it is important to continue looking for and finding the light in the perceived darkness. My generation has been very sheltered, especially those of us living in Massachusetts, as we have simply enjoyed the liberties the previous generation and beyond fought so long and hard to give to us. As a result, I do not remember a period in my lifetime before now when there has been such a strong and collective response to governmental infringement on the civil rights of people from all different groups – including immigrants, LGBTQ people, women and of particular importance to me, individuals with disabilities.

I have been intimately involved with disability issues in a myriad of ways including personal, academic and in a professional capacity for my entire life. In college, I took a Sociology of Disability class that had a profound impact on how I viewed such issues and the manner in which I hoped to fight to resolve many of them. During a lively class discussion, the professor pointed out that disability was the only minority that anyone could join, at any point in their life, should circumstances change.

Despite this reality, the disability community has remained one of the least well-organized in terms of uniting the different factions within the group to advocate in one voice for their collective rights, as well as inspire outside individuals to lobby just as hard for those same rights. That perspective has always stuck with me, especially while studying the path to passage of different federal and state laws enacted to protect individuals with disabilities in every major area of their lives, from school through employment opportunities and even access to public buildings and institutions.

Yet under the current administration, it appears as though an ever-growing group of the general population is coming together to fight for the equal rights of everyone in this country, including those with disabilities. For example, the significant public outcry to the confirmation of Betsy DeVos to lead the Department of Education was not solely circumscribed around her lack of qualifications as it pertained to students in the general education world, but also her utter ignorance of critical federal legislation that is essential to the protection and education of students with disabilities.

While I had been very focused on that aspect of her confirmation hearing, I was shocked and then heartened when I looked around and saw that so many others, without my background or a personal connection of their own, were likewise upset and concerned about what her leadership might mean for students with special needs. These individuals called and wrote letters to their representatives, protested outside schools and used any outlet available to them to express their fear, concerns and to demand better for all of our children. Their outrage and dedication to fight for the rights of everyone in this country, not just their own and those of their family and friends, breathed new life into my lifelong passion to fight for the rights of those in need.

Yes, we live in scary times. But it is important to find that light in the darkness where it may exist.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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When I Stopped Blaming Myself as an Abuse Survivor With a Disability

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Editor’s Note: If you’ve experienced domestic violence, the following post could be potentially triggering. You can contact The National Domestic Violence Hotline online by clicking “chat now” or calling  1-800-799-7233.

In life, there’s no real way of telling what we have in store for us. I don’t think anyone anticipates that one day they, or someone close to them, could become ill and have very little chance of fully recovering. Unfortunately there are people who don’t have others’ best interests at heart and who may try to gain as much as they can from your situation. Sometimes we can be so exhausted from fighting, or even so glad someone noticed us, that we are vulnerable to opportunistic people. Of course not everyone is like that, but in my experience, three things can really make people show their ugly side — sex, money and drugs. Any combination of these can spell a horrible situation indeed.

The thing is, people usually don’t think abuse happens outside the stereotype. You know the story, little old dear living at home alone, carers (or even family and supposed friends) come in and some of them help themselves to their purse or other valuable properties. Or worse, they physically assault the person. The sad reality is that sometimes abuse gets ignored or swept under the rug because of the victim feeling embarrassed, or because they​ have dementia and don’t know it’s happening. But abuse isn’t just happening to older vulnerable adults. It also happens to younger people with disabilities, and to the victims, it is just as distressing.

My message to anyone who has been abused, especially by greedy individuals who have taken advantage of them, is this:

There is no shame in being vulnerable due to disabilities. It isn’t something we did out of choice, and the real shame should lie at the feet of those who took that opportunity and tried to gain from our situation.

Abuse takes a lot of different forms. Obviously there is physical abuse, like being pushed around, struck or attacked by someone. Then there is verbal abuse. I can say from my own experience that being bullied and degraded by someone, whether it be “telling off” or outright being told I was “useless” or “stupid” can leave you with deeper scars than anything else.

I let someone emotionally bully me because I had been told that due to my disabilities, no one could possibly love me and I was “damaged goods.” Sometimes this person would go further and bully me for my pain medicine, as they thought I was unworthy of it and made sure I believed it, too.

Then I come to financial abuse. This one was particularly distressing for me, as money or things would mysteriously vanish and I’d be almost chided into believing they had not been there or that I was mistaken. “You never put it down… Did you?” Or I would face patronizing comments like “Oh bless her, she’s just so confused,” which left me doubting myself  — even now, years later, when I can’t find something after I put it down. It still makes me feel vulnerable and like I shouldn’t be trusted with important stuff. I know my medication can have an affect on my memory, which in turn means I’m not always sure about things. I ask people not to discuss certain things with me after my meds to keep me safe. I have thought about stopping the medication, but this wouldn’t be a sensible idea as I take a lot of pain medications and it would mean pain would be constant again.

It’s been a few years since I ended an abusive relationship, and I am pleased to say I am getting more confident. I’m looking forward to a better life, but that’s only possible because I stopped blaming myself for everyone else’s actions and started holding the right people accountable. Please don’t hesitate to stop abuse. You aren’t the faulty party.

If you or a loved one is affected by domestic violence or emotional abuse and need help, call The National Domestic Violence Hotline at 1-800-799-7233.

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More Than 50 People With Disabilities Were Arrested After Protesting in D.C.

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On Wednesday, 54 people with disabilities as well as disability allies were arrested in Washington D.C. after protesting the American Health Care Act (AHCA), the Republican replacement for the Affordable Care Act (ACA). The protest, organized by ADAPT, a national disability rights organization, included disability activists from around the country – almost all of whom were arrested.

“We’ve been pushing against the health care repeal for a while,” Stephanie Woodward, a disability rights lawyer and activist, told The Mighty. “The repeal turns back the clock on disability rights, and that is not something we are OK with.”

When the ACA was passed seven years ago, it expanded Medicaid and established Community First Choice, a provision offering additional federal funding to states that provide in-home care services. As it stands today, the AHCA plan would get rid of Community First Choice and would cap or block grant Medicaid, severely limiting how much states can spend on home and community-based services. Without these services, many people with disabilities who rely on Medicaid for care would be moved out of their homes and into nursing facilities.

To protest the Republican repeal plan, more than 50 disability activists from across the country gathered in the Rotunda of the Capitol building to have their voices heard. “We haven’t taken the Rotunda in 15 years,” Woodward, a participant in Wednesday’s protest, said. “We decided to take the Capitol Rotunda because if decisions are made in the Capitol, then that’s where we want to be.”

The group took the Rotunda at 2:00 P.M., chanting “Rather go to jail than die without Medicaid,” “Ho ho, hey hey, my Medicaid has got to stay” and carrying signs stating “Medicaid = life for disabled people” and “Don’t cut our services.” Within less than an hour, they were arrested by U.S. Capitol Police.

Protestors were not handcuffed or zip-tied and were evacuated from the Rotunda and moved to a different part of the Capitol where each person was photographed, processed and given a $50 fine.

After they were released, Woodward and her fellow protesters went to pay their fines. According to Woodward, the ticket they each received said all fines must be paid within 15 days. But when Woodward and the other ADAPT protesters went to pay their fines, they were turned away by Capitol Police and told they would have to wait 24 hours before they could pay their fines.

“We had people from across the country with different travel plans,” Woodward said. “Fifty dollars doesn’t seem like a lot, but it’s quite a privilege to fight for your rights. Not everyone has the finances to get a hotel room to stay overnight and pay a fine the next day.”

Those who needed to leave the D.C. area, left and returned home. ADAPT sent a representative back to the Capitol Police at 10 A.M. to pay the collective $2,700 fine, and was prohibited, once again, from making a payment. Capitol police refused both cash and credit, Woodward said, maintaining that each protester must return within 15 days to pay the fine or a warrant will be issued for their arrest.

To help pay fines, protesters are asking people to donate to ADAPT. “There is no liberty being locked up in a facility,” Woodward said. “We will continue to fight the American Health Care Act and hope our Representatives and Senators will understand and vote against this. We will fight anything that goes against our liberty to live in freedom.”

Responding to a request for comment, a spokesperson for Capitol Police confirmed that 54 people were arrested Wednesday afternoon. 

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