Hands in prison cell.

Why We Can't Ignore the Link Between Disability and Mass Incarceration

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Colin Kaepernick, the San Francisco 49ers quarterback, refuses to stand up for the national anthem,
saying “I’m not going to stand up to show pride in a flag for a country that oppresses black people and people of color.” Whether you agree with his protest or not (and people have very strong views both ways), he has focused particularly on the epidemic of young black men who have been killed by police. But there is more to the story than the very important issue of race alone. Ableism is also a key factor.

As was demonstrated in a major report commissioned by the Ruderman Family Foundation, disabled individuals make up a third to half of all people killed by law enforcement officers, and make up the majority of those killed in use-of-force cases that attract widespread attention. The media is ignoring the disability component of these stories, or, worse, is telling them in ways that intensify stigma and ableism. Given how the media has omitted the full facts, I doubt that Mr. Kaepernick or most of his fans, despite their good intentions, know this aspect of the story.

Rightfully, there is increased attention to how to stop these killings and in criminal justice reform overall. But if we look at race alone, we will not achieve the success that is needed. We need to look at the scourge of racism and training for police and other law enforcement professionals. But we also need to own up to the fact that jails and prisons have become substitutes for psychiatric hospitals, a dire human rights abuse. Moreover, a critical piece of the puzzle has been missing from the conversation: the nearly 750,000 people with disabilities, most of whom are of color, currently incarcerated as well as hundreds of thousands who will enter the system if things do not change significantly. We need to understand and address the harsh realities facing people with all kinds of disabilities who are behind bars.

As RespectAbility’s report, Disability & Criminal Justice Reform: Keys to Success, points out, 32
percent of people in prison and 40 percent in jail have at least one disability. More than 140,000 people in prison are blind or vision impaired, approximately the same number are deaf or have significant hearing loss and about 200,000 people have mobility issues. Fully 500,000 people who are
incarcerated have cognitive issues. One of the biggest challenges is executive function disorder, a very real disability where people generally cannot follow multi-step instructions. Frequently people make the mistake of thinking these individuals won’t comply with multi-step instructions, when the issue is that they can’t, until the instructions are broken down into smaller chunks or they have visual prompts about the steps. Both of these things can be easily done – but are often missed. Executive function disorder is often caused by lead in paint or water, something all too common in low-income neighborhoods.

The experiences of prisoners with physical disabilities, most of whom are people of color, show how unprepared the corrections system is to meet their basic human needs. For example, Joseph Heard, who is deaf, spent 22 months in prison after a judge dismissed charges against him and ordered his release, because no one communicated to him that he was free to go in an accessible manner. Raymond Fox developed permanent brain damage after being denied medication for his epilepsy. From a lack of training and accessible equipment to limited access to health care, our nation’s corrections system neglects people with disabilities.

In response, our report Disability & Criminal Justice Reform: Keys to Success, outlines steps to
integrate the disability lens into criminal justice reform. Overall, three critical stages must be addressed.

First, children with disabilities, especially those of color or who are new immigrants, need diagnoses, early interventions, resources, high expectations and work experiences. They face bullying, abuse or school suspensions and are among the most vulnerable when it comes to poverty, exploitation, victimization and violence. Only 61 percent of students with disabilities graduate high school, compared with 81 percent of those without disabilities – a 20-point gap. Addressing these issues can prevent these youngsters from joining the school to prison pipeline.

Second, we must address the challenges that people with disabilities face inside the system and prepare them for success upon release. They need adequate access to counsel, accommodations and supports. People with epilepsy who experience seizures should not be forced to sleep on the top bunk, which is a huge safety threat. People who need canes to walk should no longer be denied them for “safety” reasons. Deaf individuals should not be placed where no one else speaks American Sign Language, effectively silencing them. People who are hearing impaired or have other disabilities should not be forced into solitary confinement for their own “protection,” as that can lead to mental health issues.

We need to recognize and accommodate those with disabilities while ensuring access to literacy, including screen-reader technology for those who are vision-impaired. Many need to learn life skills. Not only should we respect the human rights of people with all abilities, but making these changes also will help reduce further crime when prisoners are released.

Third, more than 200,000 people with disabilities leave incarceration each year. We cannot continue to pretend that just releasing people from prison or jail is enough when recidivism rates remain high and the majority of returning citizens and residents lack the support needed to succeed. Families, government agencies, nonprofits, faith, community leaders and others need the training and capacity to improve release, reentry and reintegration. This includes access to stable housing, medications for mental and physical health and, above all, jobs.

The gap in labor force participation between people with and without disabilities is enormous, even for those without a criminal record, despite the fact that the majority of working-age people with disabilities want to work. As we approach Labor Day, we need to remember that only one-in-three working-age Americans with a disability has a job.

These issues are so vital that we have included them in RespectAbilty’s candidate questionnaires. Already Hillary Clinton and 16 candidates for Senate or Governor from both sides of the aisle have given us policy ideas on these issues. We are still waiting to hear from Mr. Trump and many candidates for Senate or Governor. You can help us by reaching out and asking them to complete the questionnaire.

Colin Kaepernick is right to focus on race – but it’s more than race alone. The discrimination and challenges faced by people with multiple minority statuses (i.e., disability + racial minority) requires national attention and resources. Without this critical piece of the puzzle, reforms will never truly succeed.

 

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When I Fear Losing My Identity After Stopping Work Due to Disability

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“Nice to meet you. What do you do?” That question is asked so many times in our society that it has caused us to identify ourselves by what we choose to do for employment. But what if you cannot work? How do you identify yourself?

This is a question I have been struggling with for a while now. I have been in the professional world for over 10 years, and I have worked at least part time since I was 15 years old. With a master’s degree, I planned to be a working professional until I retired. However, my disability appears to have other plans for me. Now I must come to terms with the fact that I may not be able to answer the question, “What do you do?” much longer. Who am I? What will I be then? Just another person with a disability? Is that what defines me now?

The disabled world has been a part of my life since birth. Not because of my own disability, but because of family members. I grew up with an uncle and two cousins with spinal muscular atrophy type II. I remember the many years of volunteering at the local MDA Telethon every Labor Day weekend. I visited the MDA camp every summer with my uncle as I got older, and met multiple friends. It is there where I met my future wheelchair basketball coach, who was also a counselor there. At age 16 I became a counselor at the MDA camp; unbeknownst to me, 15 years later I would be given a diagnosis of mitochondrial disease, a form of muscular dystrophy.

I began volunteering for a children’s recreational rehabilitation program teaching adaptive sports to kids with disabilities at age 15, and when I began showing symptoms of my own disability, I too began playing wheelchair basketball. After graduation I went to college for social work. Once I graduated, I began my career as a mental health case manager working with individuals with mental illness. I enjoyed that career for five years before transitioning to therapeutic foster care working with children with disabilities in the foster care system.

I then transitioned to my current position as a probation officer after obtaining my master’s degree in Forensic Psychology. Here, I work with individuals with disabilities on a daily basis. It is astounding how many individuals with disabilities are involved in the criminal justice system. The system that needs to be revamped, and it must begin with an in depth look at our treatment providers, but that is a different topic altogether. After five years of service with the probation department, I have finally come to the end of my ability to continue. This has been a very difficult decision for me to make.

I must admit, I have always had trouble with the idea of being unable to work. I have helped so many people apply for and obtain Social Security Disability, but I have always thought it was something I would never do for myself. To be honest, part of me almost felt as if I was better than that. I felt as if I had the education and training to overcome whatever obstacle would come my way, and I would never be the person who would say, “I’m on disability.”

Even as a social worker, I have my own biases about people who live their lives on social security. Maybe it’s because I have worked with some people that I have felt were using it as a cop out. I will admit I have thought, “Well if I can work, why can’t you? Surely you can’t be worse off than me.” Maybe it was my age, maybe it was my inexperience, or maybe it was my subconscious fear of my own limitations surrounding work. I have come to realize that I am no more qualified to determine how disabled someone else is than they are to determine how disabled I am. A person’s disabilities are their own struggles that nobody else can fully understand.

I worked until I could work no more, and then I worked some more. I was in denial, and I pushed myself to the point of exhaustion. Sick days became more frequent, productivity became slower, mistakes happened more frequently, and I was reaching my limit. More and more symptoms began arising,  and my symptoms were increasing in frequency and intensity. I had to make a decision, and that decision was I could no longer return to work. The paperwork for long-term disability was started. The application for SSDI began. I had become one of my former clients. What was happening to me? I was losing my sense of self. I was losing my purpose in life. Who was I now? How do I answer the question, “What do you do?”

I’ve come to understand that our society has placed value in the wrong place. We need to focus on the person, not what they do or what they can do. I have bought into the idea that my job defines me for many years. I have pushed through pain and suffering because of the fear of losing my identity if I am not working. I would be a failure. I would be giving in to my disability. I would be nobody. These are all thoughts I had, and sometimes they still pop up every now and then.

It took a lot of soul-searching and support from my husband to finally come to terms with the fact that listening to my body and understanding my limitations is not giving up. I lose no part of myself by not working, because my job does not define me. I am not my job, I am Me. I am a loving wife, I am caring, I am an animal lover, I am adventurous, I am funny, I am family-oriented. I am Me, and nothing can change that. My job and my disability are only parts of my life; they do not define me. Don’t let any single part of your life define you, just be you!

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When Insurance Called the Wheelchair I Need a 'Luxury'

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Health care should not be as challenging as it is. Patients are often left fending for themselves, getting little direction from anyone. In addition, being willing to use necessary and potentially groundbreaking new products should be something that is encouraged, not discouraged.

I have spina bifida. I’m in a wheelchair. When I was born in 1980, doctors knew little about my condition; my mom was told that I would live about six months.

Nick Heilig and his son.
Nick Heilig and his son.

Here I am, 35 years later. I have never wanted anyone to feel sorry for me; this is who I am! As many of my close friends know, I am not one to want to ask for help, whether it be help opening a door or assisting with my medical care. I believe in having a positive attitude, facing what I have been given, and making the most of it. Fortunately, I have a loving family and friends and have experienced many great things in my life. I also know there are people who struggle every day with worse situations than mine.

For over two years I have been dealing with a pressure ulcer, and have exhausted all other routinely used treatments. I’d like to return to the everyday life of work and doing the things I enjoy. While at a recent doctor’s appointment, I was recommended a fairly advanced product (PRP-Platelet Rich Plasma) that would assist in wound healing.

This treatment has been denied by my insurance for three reasons: it is experimental, it has been deemed “not medically necessary,” and because of my contract, it would not be covered.

To me, being a guinea pig is exciting. Of course, there’s the unknown, but this could possibly be the one that works. Everything medically available now must have been “experimental” at some point. Some treatments work and some don’t. There may be that one thing out there to help an individual, like me, in need.

I consider the term “medically necessary” to be extremely arbitrary. What is medically necessary for me may not be for someone else.

Lastly, not being able to get medical care that is necessary due to a specific contract is unsettling. Someone in need of a specific medical intervention essential to their unique case should not be denied because of their plan.

My time in “the chair” has afforded me many opportunities to experience the not-so-pleasant side of the insurance game. It has left this otherwise upbeat, positive person frustrated. Why would a medical supply store refuse to submit a purchase as an insurance claim? Loss of revenue. Why will insurance not cover a new wheelchair with a stronger titanium frame? Titanium is a “luxury.”

Believe me, nothing about being in a wheelchair is a luxury. Wheelchairs are expected to last from three to five years before insurance covers another. My wheelchair is part of me. It gets a lot of wear and tear and needs to be replaced more often than insurance allows. I could go on and on.

I am not a complainer. I do, however, feel the need to inform decision-makers that it’s time to ask questions, do research, and investigate issues that desperately need to be addressed in all aspects of healthcare, not just insurance, both locally and nationally.

Health care reform is critical for people with disabilities, for all people. Medical care and insurance can cost thousands of dollars, yet people still can’t get what they require. Something is wrong.

Health care should be about helping people to maintain good health, heal safely, and enjoy a quality life, not the frustration it has become.

This story originally appeared on Push Living.

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Why Airplane Access for Wheelchair Users Should Be 'All Wheels Up'

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Greyson and his parents.
Greyson and his parents.

In 2007, my son Greyson was diagnosed with spinal muscular atrophy. We learned quickly that traveling with a child who used a wheelchair was difficult.  I realized I needed to do something to change air travel for people with a severe physical disability.

I started All Wheels Up in 2011, with the goal of creating a space for passengers to ride in their wheelchairs on every major air carrier. We are the only organization in the world conducting crash tests of wheelchair restraint systems for transport planes. While there are many great organizations and people working to advocate for better quality of care for people who use wheelchairs, when it comes to flying the friendly skies, the fact remains that planes are not truly accessible.

I recognized the hole left by the Air Carrier Access Act (ACAA) and the Americans With Disabilities Act (ADA). Currently, people who use wheelchairs cannot ride in their wheelchairs on the airplane. Instead, they must get into a transfer wheelchair at the gate. These transfer wheelchairs are incredibly uncomfortable, don’t have a headrest, don’t have a pressure relief cushion, and don’t have upper body support. You have to be wheeled onto the plane by the flight attendants.

Once you finally get into your seat, you have to sit there without proper support for the entire flight. If you have a condition like muscular dystrophy, ALS, or cerebral palsy that leaves you with limited strength or balance, you will need someone sitting next to you to help hold you up during takeoff, turbulence, and landing.

Meanwhile, the wheelchair must be physically lifted into the cargo hold by baggage handlers. Power wheelchairs generally weigh at least 300 pounds, can cost $20,000 or more depending on the model, and can only be replaced by insurance every 5 years. Wheelchairs get damaged constantly and even sent to the wrong airport, and airlines spend millions every year repairing them.

This makes traveling on an airplane with a wheelchair incredibly unsafe and even impossible for millions of people. Many do not even fly because of bad experiences and stories they have heard from others.

All Wheels Up is thinking outside the proverbial box for people who rely on a wheelchair for safe transportation and seating. AWU is the only organization crash testing wheelchair restraints, wheelchairs and other wheelchair parts for private charter, commercial flight and not-for-profit airlines.  The project is multi-faceted with many other organizations’ involvement. Even though the solution is simple, cutting through the red tape and having people step outside of their comfort zone will ultimately be the biggest hurdle. However, all of us at AWU work every day to make it achievable. Our goal is that one day in the not-so-distant future, people who need safer seating will be able to fly while remaining in their wheelchairs.

Our foundation is based on our research, not the notion that “it is not fair” or “wouldn’t it be nice.”  The most compelling information so far comes from a report published by Q’straint, the largest wheelchair securement company in the world. They have conducted crash tests of their Wheelchair Tiedown and Occupant Restraint Systems (WTORS) at 20G and passed. This surpasses the 16G sled testing that the airlines have established as a guideline for airplane seats. This ended up becoming our foundation of purpose.

The most disappointing report came from the FAA. The FAA report 7.2 medical criteria for transportation of patients by air ambulance states: “Quadriplegics will prefer cabin wall seating as providing more support on one side.” This statement, in an official report, shows the lack of attention the FAA has given to the safety of air travelers with physical disabilities. For most who experience hypotonia from quadriplegia or a neuromuscular illness, wall support is not enough for safe seating, let alone for takeoffs and landings. And what about the person next to you on the other side — are they supposed to provide support as well? And how does one transfer safely over three seats without being able to stand?

If the aviation community becomes educated about the safety issues and begins to think outside of the current model, they will realize that improved access can be profitable. In the long run, they’ll earn more money by bringing in customers who currently can’t use their services, and save on fixing wheelchairs and paying out fines.

The FAA Re-Authorization Act of 2016 has four amendments specifically addressing the disability community. Two of the four address physical disabilities and wheelchairs.  While there is more work to be done with the bill, it is the first time in history that funding to test wheelchair restraints for cabin use has been addressed. The amendment states:

“SEC. 3116. Study on in cabin wheelchair restraint systems.
Not later than 2 years after the date of enactment of this Act, the Architectural and Transportation Barriers Compliance Board, in consultation with the Secretary of Transportation, shall conduct a study to determine the ways in which particular individuals with significant disabilities who use wheelchairs, including power wheelchairs, can be accommodated through in cabin wheelchair restraint systems.”

All Wheels Up has successfully raised enough capital to conduct the first crash test of wheelchair restraints for transport planes on September 7th, 2016. We will be working with Calspan, a FAA-approved aerospace engineering and research facility to see if a wheelchair can pass the FAA crash tests using the Q’Straint system. We hope to also test several other wheelchair components to prove wheelchairs and Q’Straints can meet all the FAA requirements for safe air travel. We will be documenting everything for a full report that will be included in our feasibility study, which we will be sending to the FAA, U.S. Access Board, House Committee on Transportation, airlines, airplane manufacturers, and others.

AWU is working with disability organizations such as the Muscular Dystrophy Association, Easter Seals, Paralyzed Veterans of America, and United Spinal Association. We sit on the RESNA COWHAT board for wheelchair transportation safety. We have the full support of the FAA and the EASA (European Aviation Safety Agency), the DOT, and the House Transportation Committee. We are making great strides here in the United States and internationally. We will continue our work to ensure that someday soon, people with physical disabilities can access air travel safely and with dignity.

Learn more at All Wheels Up.

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When I See Other People in My Life Joining the Disability Community

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Several years ago I took myself off Facebook. A combination of the inevitable slew of wedding pics and the fact that my life was turning out like nothing I had planned drove me off social media. The production of my most recent play drove me back on. The theatre’s artistic director strongly encouraged all of us involved in the production to push the social media front, and since I was playwright and lead actor, I had no excuse. It took me three tries to remember my Facebook password. I gritted my teeth, and I was in.

Yes, there were slews of people who had gotten married during my four-year hiatus. A few of them had even gotten married and divorced at astonishing speed. My heart went out to them. Cute baby pictures and ultrasound images now littered my feed, and I found that I didn’t have pangs of jealously but twinges of joy as I saw old school friends find a kind of love they never knew existed. (That, and I figured these friends were more exhausted than they ever thought possible, so really how could I ever be jealous now?) But then the unthinkable happened.

We just found out that our baby has half a heart. We won’t know the prognosis until after she is born.

Back at the hospital with Sam today after another gand mal seizure. Still can’t find the reason.

Apparently I have lupus. No more hoping I’ll feel better someday. This is life now.

Anybody out there know what Dandy Walker Syndrome is? We really need hope…

It’s official, I have MS.

I used to think, as silly as it seems now, that I filled a quota. You know the statistics: One in X children are born with a disability. Such and such percentage of the population considers themselves to be physically disabled. Illness X affects how ever many people a year. Sure, the numbers change but the numbers and stats all give the same impression.

A certain quota needs to be met. Society gets a set number of disabled people and the rest of us are “safe.”

In my logical brain, I know this is not how statistics work. I am fully aware that numbers don’t play nicely, and that at the end of the day any figure we come up with is pretty much guesswork.

For the most part, people I knew didn’t have new confrontations with disability as I was growing up. My disabled friends, even those who acquired their disabilities later in life, were all disabled by the time we met. Many times that’s how we met, at some camp for special needs children, or playing wheelchair basketball on a Saturday morning. Sure, my best friend’s grandpa started using an oxygen tank when his lungs gave way, and his mobility declined as he approached his end. It made us sad to watch, but he was old, dying and losing mobility at that age is just another part of life.

It never occurred to me that my friends at school could become disabled while we were still relatively young. The idea that my cousin would get breast cancer, the high school cheerleader would have a daughter with Down syndrome, the girl next to me in health class would get Ehlers-Danlos syndrome, the friends of friends who ended up together after college would have a disabled child was never on my radar. I never dreamed that a friend who used to help me get out of bed in the morning would someday deal with severe vertigo and spend days on end in bed herself. And I’m sure these life changes were never in their plans either. While I refuse to see disability and chronic illness as inherently a tragedy, I feel heartbroken for my friends who have let go of plans, dreams, and expectations because of a disability or illness.

One day a friend from college called me. After years of not talking, we were eager to catch up. Talking about another close friend of ours she asked me: “Did you know about her first baby?”

“What do you mean her first baby? Did she have a kid without telling me about it?”

“Well, kind of.”

The answer was yes. Our friend had a premature baby. He lived for two hours and his parents held him that entire time, fitting a lifetime of love into one hundred and twenty minutes. Born so early, there was nothing the doctors could do to make him survive the world.

I dropped the phone and collapsed on the floor sobbing when I heard the news. It shook me to the core in a way I never thought possible. My heart breaks with each of these stories I hear, and in a very weird way, I feel like I’ve failed.

Although no one actually told me I was some sort of statistical sacrificial lamb, keeping everyone else safe from disability, I believed I was. My friends already had disability touch their lives, through me. Like some sort of talisman, I thought that connection should be enough to keep them safe for several decades.

When we are young, we are told over and over again to enjoy our bodies and their amazing physical capacity. Someday, our elders tell us, our bodies will be much less cooperative. Over the past few years I have spent numerous Christmases sitting around a table with a friend as his elderly father whined on and on about no longer being able to run up a fight of stairs properly. He wanted to be shipped off to Dignitas. I wanted to throw the Christmas turkey in his face.

At 32 the chronic aches and pains are already beginning to creep up on me, but for the most part, I’ve always assumed I would get off easy when it came to aging. I already know how it feels to deal with challenges and limitations. That’s just life.

I was in no way prepared to watch the people I grew up with, the friends who supported me, facing these issues for themselves or their children.

When I see their frustrations online, the pain meds that aren’t working right, the pig-headed insurers who come up every trick in the book imaginable to avoid paying for life-saving surgery, the schools who still insist on doing what’s easiest for them and not what’s best for the child, it drives me to weep. My family fought these same battles decades ago, in hopes that the fight would be over by now.

Seeing my friends face these obstacles now inevitably rips my heart out, but it also forces me to fight harder, to refuse to give up, whereas a few years ago I would simply back down and call it “grace.” I push for disability rights and justice more now because I know some of the people who are coming along behind me, people who don’t have a lifetime of stamina and endurance as I do. Many were lulled into the belief that the safety nets were there, the system worked, and that by 2016 our society had learned to deal with with one of the most basic human conditions: disability. Now they know the truth, and they need my support more than ever.

I get onto Facebook and social media now, for the most part, without dread. Sure, there are those days where my girlfriends post sappy engagement photos and I can’t help but think of Gollum as they flaunt their rings, but usually I can look past that. I’m looking for updates; first steps at the age of 6; pain-free days for the first time in months; children with disabilities achieving milestones; and friends who are just starting to let go of their false sense of entitlement to having a “normal” life.

I log on now, looking for who I can encourage, who I can love, and who is finding that fighting their body and the system is a nearly impossible war to wage.

And when the time comes, I will post photos from opening nights, articles published, good news and wedding announcements, even though I swore I never would be like that. You can call my a hypocrite or Gollum all you want. I won’t mind.

Because numbers may give us all a false sense of comfort, but when the numbers don’t work out in your favor, it’s often the stories from people you love that give you the strength to go on.

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Dear Florida Department of Education, You Need to Respond to This Viral Story

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It’s me again…

Yes, I will continue to share my thoughts and repeat the ideas I’ve been presenting for two years to the school system.

As I read the news about the Florida Statue University football player/student who sat down to have lunch with a student with autism, I reaffirm my position: the Florida Department of Education (FL DoE) and its districts are not doing their jobs.

Why?

FL DoE and its districts ought to be ashamed of the fact the media is highlighting another student is allowed to sit alone in a cafeteria. It took a visitor to the school to notice and approach him.

It is unacceptable that the leadership of that school and district (as it happens in every single district in this state and the country) permitted this young man to sit alone.

The FSU player must get all the attention. I respect him because he knows what our kids need, yet the system created to educate and socialize our kids in an academic setting does not.

Suggestion: FL DoE should be creating an action plan and submitting some kind of press release to every media outlet announcing — finally — the introduction of buddy programs in every school. By the way, there is no cost involved in creating such programs and the multiple benefits for all students have been researched and confirmed.

For the past two years I’ve been requesting the same. 

The answer: nothing. I correct myself — for a couple of weeks the attempt was made to have a fifth grader interact with my daughter. The project was stopped because there was no plan of action, no commitment, no interest, no acceptance, no support, no compliance, no least restrictive environment (LRE).

Our reality: after the last incident and my letter/request, my daughter is finally having lunch with her peers. 

I look forward to great stories from her about this experience.

In the meantime, many students with disabilities continue to sit by themselves in the cafeteria, without involvement, interaction, exposure to the rest of the student body. The responsibility lies in the principal, the ESE director, the superintendent of every district in Florida, the FL DoE ESE Bureau Chief and the Commissioner.

A least restrictive environment is the goal. FL DoE and its districts are not in compliance. The time to correct this is yesterday.

Thank you for your consideration.

Author’s note: I urge Florida State University personnel to consider the creation of a FSU buddy program. There is so much that can be done! A win-win for all.

Image via Facebook.

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