Advocating for Your Disabled Child at Public Schools

By Barby Ingle, PNN Columnist

With school starting in the coming weeks, I have been thinking about the special assistance I recieved as a child and how hard my mom and family had to fight for the help I needed. As a child, I was diagnosed with a severe learning disability and had to take special education classes through middle school and have special provisions and testing in high school and college.

According to the U.S. Department of Education, about 5.5 million children with disabilities receive special education and related services, and are protected through the Individuals with Disabilities Act (IDEA). Some kids with special needs do not qualify under IDEA, but are served under Section 504 of the Rehabilitation Act of 1973.

If you are a parent with a disabled child, you may need to inform school administrators that IDEA and the Americans With Disabilities Act (ADA) establish a legal premise that ensures that children with invisible disabilities are afforded the same rights and access to services as children with other disabilities.

Being a part of this system has given me some insight as to how it works. For instance, my parents had to fight for my right to special education teachers and sessions. It should have been much easier for me to get that assistance, but in the 1970’s schools often didn’t want to help.

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Federal law prohibits discrimination based upon disability. I eventually got the care I needed, but had to switch from private school to a public school, and my parents had to file and win a lawsuit for the special needs program to start at my elementary school. Their activism not only helped me, but all of the disabled kids that also needed assistance.

What Section 504 Requires

Section 504 is now commonly used across the country for children with learning disabilities, but I still hear of cases where a child has a chronic illness and their parents have to fight for access to a special needs program.

Section 504 is an anti-discrimination, civil rights statute that requires the needs of students with disabilities to be met as adequately as the needs of the non-disabled. It’s purpose is to give children the tools they need to prepare them to be adults who can participate in society through employment and independent living.

A child with a pain disease, disorder, syndrome or condition is protected under Section 504 if they have a physical or mental impairment that substantially limits one or more major life activities. Special assistance should be individualized to your child’s specific needs. This includes deciding how many days they go to special sessions, if they are in the main classroom full-time or part-time, if they get to take their tests in private rooms or have someone read to them the questions, and being allowed to respond verbally if writing is difficult for them.

Many children with chronic pain match the legal definition of a disability, which qualifies them to be protected by federal laws in school and in society as a whole. Even though the pain can’t be seen by others and is subjective, these kids are protected under the law.

How to Help Your Child

A child with chronic pain or an invisible disabling illness will experience physical, social and emotional challenges. You can help educate administrators, teachers and classroom aides about your child’s condition by giving them a list of symptoms and special needs. Be sure to include invisible symptoms and how the child learns best. For instance, they may need a quiet area where the lights are lowered during testing to help them concentrate. Or a child may need to wear sunglasses if they experience migraines.

A parent can also list their child’s strengths, aspirations, likes and dislikes. You should be prepared with medical documentation to educate staff about your child’s conditions and be prepared to appeal decisions made by the school if they are not providing what it takes to assist your child.

Know which kind of special accommodations are needed and should be available. Does your child need adjusted class schedules or grading, behavior management support, extended time on tests and assignments, modified textbooks or audio-video materials, reduced homework or classwork, verbal or visual testing, or technology aids?

Some children may also need help making the transition between homeschooling, special classes and regular classes. It is your responsibility as a parent to stay on top of this and keeping all involved in the loop. Remember, you are the voice of your child and can speak up at any time throughout the year.

Unlike when I was a child who started in private school and had to switch to public schools to get the assistance I needed, today students with disabilities who attend charter schools have the same Section 504 rights as those who attend public schools.

My final tip is to keep a positive attitude when facing challenges and use your right to appeal school decisions when appropriate. Keep track of your child’s progress and advocate for additional services or changes when needed. These needs may change over time. I needed more assistance and help up until 9th grade, and as I learned and grew my plan changed.

From kindergarten through college, keep an eye out for when changes are needed or when services need to upgrade or downgrade, and whether something your child needs is being neglected. For more information and assistance, contact the National Education Association.

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Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain FoundationShe is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.  

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Civil Rights Case Gives Hope to Pain Patients

By Richard Dobson, MD, Guest Columnist

People with chronic disabling pain frequently complain that doctors discharge them from their practice because of the medications they take. Sometimes doctors refuse to accept patients who are taking opioid pain medications, even though the medications treat a legitimate medical condition.

There may be hope that such actions will be considered violations of the civil rights of patients.

This week the Civil Rights Division of the Department of Justice (DOJ) signed a formal agreement with Selma Medical Associates, a large primary care practice in Virginia, that may open the door for people with chronic pain to regain their full access to medical care.

Selma Medical refused to schedule a new patient appointment for a man who was taking the addiction treatment drug Suboxone. He filed a civil rights complaint asserting that his rights were violated because has a disability.

According to the complaint, Selma Medical “regularly turns away prospective new patients who are treated with narcotic controlled substances such as Suboxone.”

The DOJ and Selma Medical settled the complaint out-of-court. The full agreement can be read here.

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In essence, Selma Medical agreed to stop discriminating on the basis of disability, including opioid use disorder (OUD). The settlement identifies several specific ways that Selma Medical was violating the civil rights of people with disabilities.

“By refusing to accept the Complainant for a new family practice appointment solely because he takes Suboxone, Selma Medical discriminated against him by denying him the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of Selma Medical.

By turning away the Complainant and other prospective patients who are treated with narcotic controlled substances, including Suboxone, Selma Medical imposed eligibility criteria that screen out or tend to screen out individuals with OUD.

Further, Selma Medical failed to make reasonable modifications to policies, practices, or procedures, when such modifications are necessary to afford such goods, services, facilities, privileges, advantages, or accommodations to individuals with disabilities.”

In the agreement, Selma Medical agreed to stop discriminating now and in the future. The staff and administration are also required to undergo intensive training on the implementation of the Americans With Disabilities Act (ADA).

Importantly for pain patients, the agreement applies to people taking “narcotic medications” for any reason and is not limited to people who are taking Suboxone for OUD. The agreement does seem to imply that people taking opioid medications also have their civil rights violated if they are refused medical care on the basis of their diagnosis and their use of opioids.

A former staff attorney in the DOJ’s Civil Rights Division agrees.  

“This formal settlement agreement from DOJ affirms that discrimination in access to medical treatment based solely on an individual’s use of a particular medication — in this case, a narcotic controlled substance — may violate the law,” says Kate Nicholson, a pain patient and civil rights attorney who helped draft federal regulations under the ADA.

Anyone who has chronic pain and who is discharged from a practice or refused admission to a medical practice should let the medical staff know that this is a violation of the ADA. Show them the agreement between Selma Medical and the DOJ. Then if the medical practice still refuses care, file a formal complaint with the Office of Civil Rights. Instructions on filing can be found here.

As part of the settlement agreement, Selma Medical had to pay $30,000 to the complainant for “the discrimination and the harm he has endured, including, but not limited to, emotional distress and pain and suffering.” Selma Medical also had to pay a civil penalty of $10,000.

It seems to me that the substance of this agreement gives real hope to the chronic pain community that discrimination based on disability, even if the disability is based on pain, is illegal and violates their civil rights.

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Richard Dobson, MD, worked as a physician in the Rochester, New York area for over 30 years, treating and rehabilitating people suffering from chronic pain, mostly as the result of work or motor vehicle accidents.  He is now retired.  

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

How Rx Opioids Helped Me Work Again

By Kate Nicholson, Guest Columnist

I recently told 2,200 intimate listeners during a TED Talk how a surgical error left me in severe pain, unable to sit or stand, and largely bedridden for almost twenty years.

I also explained that with appropriate pain management, including treatment with opioids, I continued working as a high-level federal civil rights prosecutor despite my physical limitations. I won important arguments in federal court, arguing from a folding lawn chair. I drafted the current regulations under the Americans with Disabilities Act (ADA), coordinated with the White House, and supervised thousands of cases by hundreds of attorneys across the country from a computer screen and well-camouflaged bed.

And when my pain finally improved, I stopped taking opioids.

A part of me was not eager to go public as someone who used opioids, for the same reasons that I was initially reluctant to take opioids for pain. Opioids carry a stigma, one that is only increasing today in an era of opioid abuse.

The increase in prosecutions and the oversight of physicians, and the difficulty people in pain today experience in getting appropriate pain medication motivated me to tell my story.   

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My story of pain began 23 years ago. I was working at my desk in the Civil Rights Division of the U.S. Justice Department, putting the finishing touches on a document due to court, when my back started to burn. It felt like acid eating my spine. My muscles seized and threw me from my chair.  As I curled on the floor, my body seared with pain.

Over the coming days and weeks, the pain only intensified. Any postural compression on my spine caused electrical and burning sensations to escalate like an alarm that grows louder and louder.

At the age of 30, just a few years out of Harvard law school, I could barely stand and sitting was impossible. So, I began to conduct my life lying down. For a while, I was able to commute, lying across the backseat of a car to work from a futon on the floor of my office, using a walker to get from place to place. Then for many, many years, I was entirely bedridden.

Two things allowed me to maintain a life under these circumstances. The first is that I happened to be working in one of the few jobs that would accommodate me. When my pain began, I was enforcing the ADA, a civil rights law that protects the rights of individuals with everything from multiple sclerosis to cancer to HIV disease.

The second and more critical factor was my access to good medical care. My pain began in the 1990s, when the pendulum on pain swung decidedly in the opposite direction of where it is today.  I had access to the best doctors and to treatment at a pain management clinic. My physicians tried all sorts of treatments, from lidocaine infusions and directed injections, to nerve ablations and a surgery to separate nerves from adhesions. Nothing restored my mobility or diminished the pain.

Early on, I refused to take opioids.  I was worried about addiction and stigma.  When my doctors initially approached me about taking opioids for pain, I was, at first, devastated. I felt like they were giving up, that I was being put out to pasture.  But I had exhausted my available treatment options, so I relented and underwent psychological screening to determine if opioids were appropriate. 

As soon as I took opioids, I improved. I wasn’t foggy or especially euphoric. In fact, the opposite happened, space opened in my mind and I could work again.  I also never developed a tolerance, requiring more medication for the same level of pain relief. 

Opioids did not heal me. Integrative treatment over a long period of time did.  But opioids gave me a life until I could find my way to healing. Importantly, they allowed me to continue to work.  

I understand that opioids are complicated. People are different. I also recognize that as a public health matter, the interests of treatment must be balanced against the potential for abuse.  But today we have no such balance: our media attention and public policy focus singularly on abuse.

Serious physical pain needs to figure into the conversation, especially since severe or persistent pain affects 25 times more Americans than opioid abuse.

I worry that we are throwing out the baby with the bath water. By focusing on a single substance, we are not addressing the root causes of addiction.  By placing undue pressure on physicians and the doctor-patient relationship we abandon people in severe pain, many of whom could contribute and lead productive lives, to their suffering.

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Kate Nicholson lives in Colorado. She served in the Civil Rights Division of the U.S. Department of Justice for more than 20 years, practicing health-related civil rights law and securing powerful victories including in the U.S. Supreme Court. 

Kate is currently writing a book about her personal experiences with severe chronic pain. She can be reached through her website at www.katemnicholson.com

You can watch Kate's TED Talk below:

Should You Tell an Employer About Your Chronic Pain?

By Lana Barhum, Columnist

Telling your boss or a potential employer about your chronic pain condition can be slippery slope. 

If you disclose it, you may wind up dealing with judgments and misguided attitudes from supervisors and coworkers about the extent of your chronic pain. On the other hand, if you don’t disclose it, you may miss out on accommodations you need and are entitled to.

There is always going to be risk when you disclose. And it is hard to know whether an employer will be accommodating or treat you unfairly.   

You do have rights as an employee and a person living with chronic pain. You should know what they are before you decide whether to disclose.

You Do Not Have to Be Visibly Disabled

Many people who live with chronic pain don’t consider themselves “disabled.”  Even so, they may still qualify for accommodations under the federal Americans with Disabilities Act (ADA).

The ADA defines a person with disability as someone who has “a physical or mental impairment” that significantly alters one or more major life activities. You may have trouble sitting, standing or walking, for example. The key is whether the limitation is substantial

It is important to note the ADA’s definition is a legal one, not medical. And because it is a legal definition, the meaning of disability is different than it would be under other laws. The ADA doesn’t list all the covered conditions, which gives some flexibility to people living with  non-specific chronic pain; which is pain that lasts longer than three months, but has no specific medical cause.

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For example, you could have joint pain from rheumatoid arthritis, while someone else’s back pain may not be related to a specific event or health condition. It doesn’t make the other person’s pain any less valid than yours or diminish their need for job accommodations. Back pain would still be considered an impairment.

You Do Not Have to Disclose When Job Hunting

The ADA does not require you to disclose your medical conditions when interviewing and applying for jobs.  However, the employer is allowed to ask questions about whether there is anything that could prevent you from doing the job required. 

They may inquire about medical conditions and request a medical exam, but only if they are doing this with all their new hires and being in good physical health is a requirement to perform the job.

You Do Not Have Disclose When You Start a New Job

If you didn’t disclose your condition while interviewing or when you started the job, you can still ask for accommodations later.  You have the right to ask when the need arises.

If you request an accommodation, an employer is allowed to ask for a reasonable corroboration of your need for one,  such as a doctor’s letter. You can disclose what you want about your medical condition and it doesn’t have to be everything.

You Can Disclose on Your Own Timetable

You are under no legal obligation to tell anybody at your job about your chronic pain.  Your employer also does not have any legal right to request this information from you; unless it involves health and safety obligations they are required to meet.  

It is your decision when and if you want to tell your employer, ask for accommodations and/or share with your co-workers.  You never have to let anyone know if you don’t want to.

Should You Disclose?

If you believe chronic pain affects your ability to do your job, think about the ways it does and what solutions there might be.  For example, are you leaving work often for medical appointments? Would a flexible schedule or working from home one day a week help your situation?

Or could you benefit from other tools that make it easier to work, such as an ergonomic workstation?  Keyboards, mice, office chairs, standing desks and other ergonomically designed tools are increasingly being used in the workplace because they reduce the risk of back pain and other musculoskeletal disorders. 

A good resource where you can find examples of accommodations for specific medical conditions is the Job Accommodation Network.

Things May Not Go as You Plan

If you choose to disclose, you may not get the response you want. Your employer is prohibited by law from terminating you based on your need for accommodation.  However, they might find other ways to get rid of you or retaliate, such as changing your work schedule or denying you a promotion.

They’re taking a big risk if they do. Any form of retaliation when someone asserts their rights is illegal under the ADA. The question will be -- can you prove it? Always keep good records and notes about your communications with an employer about your medical conditions.

Your employer can deny your request for a specific accommodation, provided they are willing to accommodate you in other ways.  For example, if your office space is cold and your joints hurt more in that environment, they could deny your request for a space heater due to fire concerns, but offer to move you to a warmer section of the office as an alternative.

The good news is that your employer cannot flat out deny your request for accommodation. They are required to make a good faith effort to accommodate you in ways that make it easier to do your job with chronic pain.

Good Employers Want to Keep Good Employees

There are no easy answers as to whether you should or shouldn’t disclose your chronic pain to your employer. You should do what works best for you and your workplace. A good employer will be motivated to keep you and will do everything to accommodate you. Others may not.

Make sure you are continually updating your resume and your skill-set should you need to look for a new job.

I have been fortunate to work for companies that have accommodated my needs as a person with chronic pain.  They have understood my need for a flexible work schedule, an ergonomic workstation, and to be able to leave work early or show up late after medical appointments. They’ve made it easier for me to be successful at my job.

I know the idea of disclosure can make you nervous, but it may help you get the support necessary to be a better employee.  From my experience, most employers are accommodating and want to keep valuable employees. They know that the best employees are found in comfortable workplaces.

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Lana Barhum is a medical writer, patient advocate, legal assistant and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

To learn more about Lana, visit her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Pain Clinic Settles Discrimination Case

By Pat Anson, Editor

An Indiana pain management clinic has agreed to pay $30,000 to settle a federal claim that it discriminated against a pain patient by refusing to treat him.

In an unusual twist, the discrimination case filed by the U.S. Justice Department against Pain Management Care of South Bend was not based on the man’s rights as a pain patient – but because of his HIV status. The Americans with Disabilities Act (ADA) is intended to protect all people from being discriminated against because of physical or mental disability.

According to the Justice Department, the patient was referred to Pain Management Care (PMC) in November, 2014 after the closure of another pain clinic where he had been treated. The patient sought bi-monthly cortisone injections, which he had been receiving for pain management from his previous doctor.

After sending the results of an MRI exam and other medical records to PMC, the patient received a voicemail message from a clinic employee stating that Dr. Joseph Glazier would not treat him “due to the risks involved with needles and blood due to (his) condition of being HIV positive.”    

The patient asked PMC to change its position but was still refused treatment. He was not able to find another pain management doctor willing to treat him until several months later.

“PMC’s discriminatory denial caused (the patient) to endure six months without needed pain management care and to experience emotional distress,” federal prosecutors said.

The case against PMC was filed on April 7th and quickly settled out-of-court, with Dr. Glazier agreeing to pay the patient $20,000 and a $10,000 civil penalty. PMC must also develop a non-discrimination policy, provide ADA training to its staff, and submit annual reports to the government. The consent decree still needs a judge’s approval.

PMC’s website now contains this notice: “Pain Management Care, P.C., does not discriminate on the basis of disability, including HIV. All individuals, including persons with HIV, have an equal opportunity to treatment from Pain Management Care, P.C.”

“The Justice Department is committed to eradicating discrimination resulting from the unfounded fear and dangerous stereotype that someone with HIV would pose a threat to a medical provider,” said Principal Deputy Assistant Attorney General Vanita Gupta, head of the Justice Department’s Civil Rights Division.  “Discrimination by those in the medical profession breaks a trust critical to ensuring access to appropriate treatment for all.”

This settlement is part of the department’s Barrier-Free Health Care Initiative, a partnership of the Civil Rights Division and U.S. Attorney’s Offices to target enforcement efforts on access to healthcare for individuals with disabilities. 

The Americans with Disabilities Act was signed into law by President H. W. Bush in 1990. It is intended to protect against discrimination based on “physical or mental impairment that substantially limits one or more major life activities.”

For more information on the obligations of healthcare providers under the ADA, you can call the Justice Department’s toll-free hotline at 800-514-0301. ADA complaints may be filed by email to ada.complaint@usdoj.gov or by clicking here.