Splitscreen of CSPAN coverage showing Betsy DeVos and Sen. Hassan.

Parents of children with disabilities and special needs are urging one another to call their Congressperson’s office following Tuesday evening’s senate confirmation hearing for Betsy DeVos, President-elect Donald Trump’s pick for Department of Education Secretary. DeVos is a well-known advocate of charter schools – which receive government funding and can be privately owned but operate outside of the public school system – and voucher programs – which give students money to attend private schools – as well as a billionaire whose family, according to DeVos, has possibly donated $200 million to the Republican party.

Concern over DeVos’ appointment comes after questioning from multiple Democratic Senators regarding her knowledge of federal protections for disabled students. Throughout the evening DeVos appeared to be largely unfamiliar with the Individuals with Disabilities Education Act (IDEA), a federal law ensuring special education services to children with disabilities.

When questioned by Sen. Tim Kaine (D-VA), who asked DeVos if she agreed that “…all schools that receive federal funding — public, public charter, private — should be required to meet the conditions [of IDEA],” DeVos said, “I think that is certainly worth discussion.”

Later in the evening, when questioned by Sen. Maggie Hassan (D-NH), whose son has cerebral palsy, DeVos avoided answering whether or not she would enforce IDEA, the nationwide law protecting children with disabilities.

Hassan said:

My son, Ben, experiences very severe physical disabilities. He has cerebral palsy. He can’t speak, he can’t use his fingers for a keyboard. He doesn’t walk, but he is smart and the best kid on earth, if I do say so myself. He got a quality public education at our local school…. And I am concerned that when students who experience disabilities receive a publicly funded voucher to attend a private school, they often don’t receive adequate resources, and in some cases have to sign over their legal rights under the Individuals with Disabilities Education Act. So, do you think that families should have a recourse in the courts if their child’s education does not adequately meet his or her needs, whether it’s at a school where they get a voucher or in a more traditional public school?

After thanking Hassan for her time and question, DeVos replied, “I would advocate for all parents to be able to have that opportunity to choose the right school for their child,” to which Hassan responded:

I had the opportunity to send him to the same public school that my daughter went to because law required that school provide him resources that were never required before that law was passed – because they’re hard. And so the question is, will you enforce the law with regard to kids with disabilities if the voucher program did allow them to go someplace else and the school said, “It’s just too expensive, we don’t want to do it.”

DeVos responded by citing Ohio’s success with its voucher program, to which Hassan interrupted, saying:

Because my time is limited, excuse me for interrupting you. What I am asking you is, there is at least one voucher program in Florida, the McKay voucher program, which makes students sign away their rights before they can get that voucher. I think that is fundamentally wrong, and I think it will mean that students with disabilities cannot use the voucher system that a department under your leadership might start. So I want to know whether you will enforce, and whether you will make sure that children with disabilities do not have to sign away their legal rights in order to get a voucher should the voucher program be developed.

DeVos replied with more statistics, this time regarding Florida’s voucher program, but did not say if she would enforce the existing law.

After moving on from her original line of questioning, Hassan followed up later in the evening, asking, “So were you unaware, what I just asked you about the IDEA, that it is a federal law?” 

“I might have confused it,” DeVos replied.

Hassan then explained what IDEA does, following up with her concerns about DeVos’ nomination:

One reason that it is difficult to have this hearing and feel that we fully understand your perspective is because we do know that children with disabilities, in at least some of the voucher programs that you have supported, have gone with a voucher to a school. Because of their disability, [they] had to leave the school. The school keeps the money, and then they go back to public schools, which now have even less resources to deal with them. And many of us see this as the potential for turning our public schools into warehouses for the most challenging kids with disabilities, or other kinds of particular issues, or the kids whose parents can’t afford to make up the difference between the voucher and the cost of private school tuition.

Hassan went on:

I just would urge you to become familiar, should you be nominated, with the Individuals with Disabilities in Education Act. And I do have to say, I’m concerned that you seem so unfamiliar with it, and that you seem to support voucher schools that have not honored, that made students sign away their rights, to make sure that the law is enforced. That is very troubling to me.

DeVos vowed she would be “very sensitive to the needs of special needs students and the policies surrounding that,” prompting Hassan to reply:

And with all due respect, it’s not about sensitivity, although that helps. It’s about being willing to enforce the law, to make sure that my child, and every child, has the same access to public education – high-quality public education. And the reality is, the way the voucher systems that you have supported work, don’t always come out that way, and that’s why it’s something we need to continue to explore.

You can watch the full exchange between Hassan and DeVos below. 

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I have been meaning to set up a blog since I visited America, but never thought I’d have the linguistic creativity to manifest my thoughts onto paper, especially as I don’t read. As those six months slowly start to dissipate from memory, I know it needs to be written and recorded – for my own therapeutic sake. A lot has happened since then; American road trip, volunteering, reconnecting with a lost friend from the orphanage, Rio, starting university, discovering wheelchair skiing, leaving wheelchair basketball, leaving university… and now here I am: about to pack for an upcoming ski trip in late January, and reunite with a friend from China in late February.

I remember the jittery angst I felt days before university. It didn’t really hit me until I was waiting for our return flight at the Rio de Janeiro airport. My summer has come to an end, and although I knew I’d be a changed person, I couldn’t even begin to fathom how much it has replenished my mind, body and soul.

Prior to the trip I received a joint Children of Courage award with my sister, won gold with Great Britain in Germany and secured a place at my first choice university. Despite the external success, I felt mentally ill-equipped. The fight within me that was once praised was gone. It was an insidious, mind-numbing, hopeless odyssey that has unraveled itself since college. My creativity suffered and it caused a domino effect across all aspects of my life.

America has provided moments of solitude and clarity, which was what I needed to recover. We camped in the beating heat between San Francisco and New York, within the course of 23 days across national parks, campsites and deserts. The heat forced me to dispose of the baggy T-shirts and leggings I brought with me. In the same way I stripped down my clothing, I stripped down my insecurities. Being in a wheelchair, people usually underestimate me until proven otherwise, which is an inevitable curse for those with incredibly low self-esteem. I was surrounded by people I didn’t know, and with a company that never took a wheelchair user before. But as days turned into weeks I grew more in confidence, within myself and about my chair. I realized that I have been vicariously living on empty pursuit, and in blissful ignorance of my true self – but that is for another day.

It became apparent throughout summer that to be successful with a disability meant to succeed in one obvious pursuit: the Paralympics. I had to be extraordinary to be ordinary, as being ordinary meant I was underachieving. I was living the most normal life for an 18-year-old, yet I was constantly reminded that I looked good for a disabled girl, or praised for pushing up a hill or being out in clubs. Entering the dating scene was interesting, but I was lucky that my first date was charming – despite spilling my drink and getting tipsy because I was so nervous, and drunkenly saving someone’s number as “white boy on legs” in a club. But again, that is another story.

It felt like I was living in an in-between world: not part of the able-bodied or the disabled, where everyone is lumped together as inspiration porn. The more I embraced my passion for sports and adventure, the more I was hailed as extraordinary. The more of a party animal I became at university, the more respect I gained. The more active I was with my legs and out of my chair, the harder it was for people to understand the disability spectrum.  It reflected a perception that myself and other wheelchair users are imprisoned in undesirable, disease-ridden bodies and crippled for a lifetime of doom and gloom… and anyone who slightly challenges that one-dimensional delusion of disability was considered a hero.

Sitting at the departure lounge at the Rio de Janeiero airport, I wondered if my newfound fulfillment would carry me through university. It has taken an extended period of self examination and contemplation to realize that nothing was a quick fix. I don’t know my path or where it’ll lead me, but I have a better idea of who I am and where I want to go. It’s going to be beautifully unpredictable, but the odyssey is mine. That is empowering.

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Travel has always been a passion for me and my husband.  We love to travel all over the world.  When the doctor diagnosed me with Chiari malformation and then the common comorbidities that go along with it (EDS, POTS, IH, MCAD, etc.), I was afraid I would not be able to continue to travel.

My husband and I go somewhere outside of the United States every year in May to celebrate our anniversary.  I had decompression surgery for Chiari in February 2012.  We had already made arrangements to travel to Belize in May of that year, and I was not about to cancel.  I wasn’t sure what to expect, but I knew I had to do this.

I packed up all of my medications and usual belongings for a trip to the tropics and we left for our journey.  The airplane ride was a little rough, with the changes in cabin pressure and altitude feeling like my head was going to explode. Once we arrived at the resort, I needed to rest. I took a pain pill and asked my husband to go to dinner with our friends and let me rest.  It was a tiring week, but I survived, and I am so glad I got that first trip under my belt.

Since Belize that year, my husband and I have traveled as far as Bali and I am so happy that we can continue. Many people ask me why and how I continue to travel. I tell them, “I can pass out at home or pass out at a tropical location. I choose the second.” I do have many seizures and have to rest a lot while I travel, but I have found some things that work.

1.       Compression stockings.  These help me so much on the airplane ride.  Make sure that you get the correct ones for you.  For some people, the knee-hi ones are not good and make you worse.  Please check with your doctor before purchasing any.

2.       Gatorade packets and an empty water bottle.  Since you are not allowed to bring liquids with you and many places we travel to do not have Gatorade or Powerade, this has been a lifesaver for me. Once I have gone through security, I fill up my water bottle with water and one of the packets. You can usually buy Gatorade in gift shops at the airport, but it is very expensive. Also, once you are at your location, you will have your supply.

3.       Wheelchair. If I do not take my personal wheelchair with me, I always make sure one is available at the gate when I arrive. Also, I try to look at a map of the airport if I am unfamiliar with it to see the distance I will need to walk.

4.       Cool towel. I always have a cool towel in my purse.  You never know when your body temperature is going to fluctuate. These are available at most sporting good stores.

5.       Travel insurance. Always purchase travel insurance, so you can get care when you are abroad or get back home if there is an emergency. It is entirely worth the money.

6.       Research. Please research the regulations for medication of the country you are visiting.  Some countries have strict guidelines regarding narcotics and other medication.  Many of us are on Adderall, pain medication and other medication that might fall under restrictions. Usually, you can get a letter from your doctor explaining the medication and why you are taking it.

7.       Notify the flight attendant of any medical issues you have. I had a seizure on one flight, and the pilot was going to do an emergency landing to medical help. Once my husband explained what was happening to the flight attendant, everything was OK.

8.       Be prepared for questions.  When I traveled through Doha, Qatar, I had my hard neck brace on, and security questioned me. He asked me if it was a necklace, and I had to try to explain that I needed it to stabilize my head and neck.  He looked at me weirdly, but finally let me through.

These are only a few of the issues I have faced while traveling. I know I will usually have something happen during travel; however, it is worth all of the fun I will have during the remaining hours. Please do not let your illness keep you from following your passion. Yes, it might be harder than before, but you have to keep going forward with your life.

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