Your disability is protected health information

Your disability is protected health information

Recently a friend was challenged in public because she has an invisible disability. To those who confronted her, she did not appear as though she deserved a handicapped parking space. She felt coerced into sharing private health information with strangers while trying to enjoy a nice outing with her family. The incident was hurtful and put a damper on the evening’s fun.

This isn’t the first time I’ve heard about such incidents.

While there will always be small-minded trolls, the backlash against invisible disabilities seems to be growing. It gets worse when politicians join in. In January 2015, Senator Rand Paul made it clear that he was among those who doubted the veracity of nearly half of all those currently receiving Social Security Disability Income (SSDI).

“What I tell people is, if you look like me and you hop out of your truck, you shouldn’t be getting a disability check. Over half of the people on disability are either anxious or their back hurts — join the club. Who doesn’t get a little anxious for work and their back hurts?  Everybody over 40 has a back pain. And I am not saying that there are not legitimately people who are disabled. But the people who are the malingerers are the ones taking the money away from the people who are paraplegic, quadriplegic. You know, we all know people who are horrifically disabled and can’t work, but if you have able-bodied people taking the money, then there is not enough money for the people who are truly disabled.”

The worst part about this statement is that he should know better. As a member of Congress, it is his job to oversee the budget. Social Security programs are a part of the national budget and are funded by payroll taxes earmarked specifically for retirement and disability. In 2014, the trustees of Social Security released the results of an investigation into fraud, waste, and abuse of Social Security benefits. The investigation revealed that less than 0.2% of all benefits were fraudulent. Contrary to Senator Paul’s statement, malingering is not widespread within the Social Security program. In fact, the Social Security Administration does an excellent job of screening applicants and monitoring for fraud. Nobody is “taking money away from” those more deserving because the disability application process is so rigorous.

What Social Security staff know that Senator Paul and others like him seemed to have missed is that disabilities include a lot more than just paraplegia or quadriplegia. In fact, some people with paraplegia have greater ability to work than those with less obvious disabilities. Disability benefits are awarded based on a person’s ability to work. Those whose symptoms are severe enough to prevent them from working any type of job generally qualify for benefits. Many people with disabilities are able to work and excel at their jobs. They do not need, nor do they apply for, SSDI. Among those who apply, not all are approved. Many applicants spend years going through the appeals process before finally receiving benefits.

Disability status is protected information

The Health Insurance Portability and Accountability Act (HIPAA) protects patients from being forced to disclose information about their disability to anyone. If you are disabled, you are not required to justify your disability status to self-appointed “disability police”. That information is private and protected by law. You may grant written permission for the release of limited information. You may also rescind that permission (in writing) at any time. No one has the right to demand that you justify your access to SSDI, SSI, handicapped parking, or any other disability-related benefit, except the agency that determined your eligibility.

Reasons you may choose to disclose information

Obviously, there are some people who need your health information in order to best help you. Your doctors would be useless without your health history. Still there are others who are not so obvious.

  • Physicians, dentists, psychologists, and other health care providers need access to health information from each other to improve treatment collaboration.
  • Health insurance companies need access to health information in order to process claims and pay out benefits.
  • Private disability insurance companies need access to health information in order to process claims for benefits.
  • The Social Security Administration needs access to health information in order to determine eligibility for disability benefits.
  • Employers need limited information when requesting accommodations in the workplace or asking to use FMLA.
  • The DMV needs limited information in order to issue a handicapped parking permit.
  • Attorneys need access to health records when retained to appeal a denial of benefits or pursue any legal action relating to disability.
  • School officials will need limited access to health information when determining eligibility for Special Education services.
  • Loved ones may need access to health information in a variety of situations such as emergency care, consent for treatment when a patient cannot communicate, etc.

Dealing with bullies

Knowing the facts won’t prevent you from being cornered by loved ones, co-workers, or even complete strangers. Some people have poor boundaries. They think that it is their right to insert themselves into the privacy of others. No amount of knowledge on your part will stop them from being bullies. That’s right. People who challenge your disability status are bullies. So don’t reinforce their childish behavior by giving them what they want. Stand up to them and refuse to engage in their “prove it to me” game. If you are concerned that you might get flustered, then memorize some of these comebacks:

  • It is none of your business.
  • That’s between me and my doctor.
  • Leave me alone.

On rare occasions, you may have to take additional measures. Some bullies don’t know when to quit. Some may even violate local, state, or federal laws by continuing to harass you or in trying to impede your rights (blocking your path, pushing or shoving, etc.). Hopefully you never encounter such hostile behavior. In the event that it does occur, know that you have several options depending on the nature and location of the behavior.

  • Report a co-worker to Human Resources
  • File a complaint to the Department of Justice for violations of the Americans with Disabilities Act (ADA)
  • File a complaint to the Department of Education for violation of the Individuals with Disabilities Education Act (IDEA)
  • Contact security or the police
  • Petition the courts for an Order of Protection (OOP)

Get support

Some of us are fortunate to have supportive loved ones who will advocate on our behalf when we are most vulnerable. Many others struggle to face these challenges alone. If you are in the latter situation, please reach out for help. Find a sympathetic therapist, a friend, or support group. Go online if necessary. People are social creatures. We need others who understand, support, and love us unconditionally. We are all going to have bad days. The bullies who don’t believe us have a knack for catching us off guard when we are most vulnerable. That is when we need our support system the most.

You have rights. You are not alone.


The Washington Post Fact Checker – Rand Paul’s claim that ‘over half of the people on disability are either anxious or their back hurts’
Social Security 2015 Trustees Report
Social Security Administration – Protecting your investment
Social Security Administration – The faces and facts of disability

One Comment Hide Comments

This is an amazing summary of coping with disability, though it brings to mind an additional issue. The number of doctors who refuse to view certain patients as disabled. My first headache neurologist was a nightmare when it came to that, even though it was her own twisted logic, logic that also put medical peril on and off for months as I waited to get in with someone else. When I told her I couldn’t work after her department had sent me to the hospital twice due to the severity of my migraines, and admitted me once. When I could barely walk between the pain causing my vision to white out, and the vertigo she begrudgingly signed my disability forms, and wrote a lot of things into my medical record to attempt to sabotage my claim.

Even though another doctor when my condition was far less severe signed my short term disability forms months earlier without a flinch. The only thing that saved me was the amazing CRNP in that neurology office who ordered meds that worked in spite of the attending, and actually refused to release me back to work when I wanted to since I was half out of it in aura during the appointment. I was also lucky to have a great short term/long term disability insurance company.

Doctors have their own issues dealing with invisible illnesses (even though the Meniere’s she doesn’t believe I have can be blatantly obvious with a 1 minute in office test). Some doctor’s when it’s outside of their wheelhouse they deny that the symptoms the patient is reporting even exist. Other times it is because they are confronted with a patient they can’t fix.It brings to mind Dr. Rob Lamberts “A letter to patients with chronic disease” .

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