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by Phil Klebine and Graham Sisson

Persons with spinal cord injury (SCI) need a lifetime of medical management. They tend to have more medical issues than most people, and most health issues are related to secondary complications of SCI.

They often believe they only need a specialist in SCI to manage all of their healthcare needs. But they actually need a SCI-specialist AND Primary Care Provider (PCP).
  • SCI-Specialists are well trained to manage the unique medical issues of SCI, but they do not usually provide PCP services.
  • A PCP is trained to provide the services that everyone needs, such as treatment of common sicknesses and preventive healthcare. They watch for early signs of potential medical problems and refer patients for screening to identify any health problems and any specialized care if needed.
As a person with SCI, you may encounter barriers that make it hard to meet your healthcare needs. For example, a lack of transportation is a big problem for many, especially in areas with limited public transportation. It is an ongoing problem with no easy solution.

Another barrier is that a PCP needs to consider issues related to SCI when providing care, but they often lack knowledge about secondary conditions. Last year, the UAB Spinal Cord Injury Model System (UAB-SCIMS) launched this website for PCPs in an effort to help solve this problem by providing them information on secondary conditions that they can consider when providing care.

Physical barriers also remain a problem. Some offices are not fully accessible or lack an accessible exam table. Transferring can be a problem. Specialized screening equipment is often not accessible. For example, women who use a wheelchair are often unable to get breast and cervical cancer screening because examination tables are not height-adjustable.

You probably know the law requires equal access. Sadly, however, you likely also know that the “law” and the “real world” are often two different things. You know the real world, but do you know what “equal access” to healthcare means? Here is what you need to know.

What is the law?
Rehabilitation Act of 1973 was the first anti-discrimination, civil rights law to prohibit discrimination based upon disability. However, it was limited to only covering “any program or activity receiving Federal financial assistance.”

The Americans with Disabilities Act (ADA) basically prevents any discrimination against people with disabilities. The ADA requires barriers to be eliminated all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public.

How does the law apply to healthcare?
Generally, the law requires that medical care providers (doctors’ offices, clinics, and other health care providers) to:
  • provide persons with disabilities full and equal access to health care services and facilities; and
  • make reasonable modifications to policies, practices, and procedures when necessary to make health care services fully available to individuals with disabilities, unless the modifications would fundamentally alter the nature of the services.
Some ADA requirements are not easily implemented in the real world, so there is flexibility. For example, not every medical diagnostic machine has to be accessible so long as there are enough accessible machines to serve persons with disabilities.

The ADA requires private businesses to make changes in most older buildings that are “readily achievable” to make those buildings and services accessible and usable by persons with disabilities. This means they are to make any and all changes that are easily accomplishable and can be made without much difficulty or expense. For instance, adding a wall or an elevator is not readily achievable. Restriping a parking lot to add accessible spaces is.

Can medical providers refuse to treat you because the office is not accessible or there is no accessible medical equipment?
No. You cannot be denied the same treatment as someone without a disability. This means providers must have a wheelchair accessible entrance, and the office must be accessible, no matter if the office space is owned or leased by the provider. They must also provide an accessible examination table, stretcher or gurney if it is needed for treatment. If accessible equipment is not needed, it is reasonable for the provider to examine you as you sit in your wheelchair. (Read the Proposed Accessibility Standards for Medical Diagnostic Equipment)

Can you be required to bring someone with you to help with transferring or during the exam?
No. You can choose to bring someone, but you cannot be told to bring someone to help. Providers can ask you if you need help and, if so, what is the best way to help. But they must use a patient lift or have trained staff available to assist you if needed. This assistance may include helping you to dress or undress, transfer to and from an exam table or other equipment. If needed, providers must also have staff to stay with you to help maintain balance and positioning.

What might you do if you are denied medical service, the office is not accessible, or there is no accessible medical equipment?
The quickest and easiest way to improve access is to handle things yourself. First, ask to speak to the person in charge. This may be the doctor or office manager. Be polite but clear in telling that person what the barriers are and request that the barriers be removed.

Many medical providers do not own the facility and are only leasing it. They may not know that both owners and tenants are equally covered by the ADA. You can tell the provider that they both have a responsibility for complying with ADA requirements.

Second, get the providers address or email. You should follow-up in writing to check on progress. Be sure everything is dated.

Third, be mindful that some barriers may take longer than others to be removed. Allow a reasonable amount of time for the barriers to be removed.

Finally, if all reasonable efforts to make the services accessible have been unsuccessful, you can file a complaint.
  • Call the U.S. Department of Justice (800-514-0301) or file a complaint online.
  • Contact your State or Local Bar Association to get a referral to an attorney who may be able to assist you.
  • You may also obtain the services of a private attorney and file a complaint in federal court. 
This original article appeared in Pushin’ On (Volume 34-1), the digital newsletter of the University of Alabama at Birmingham Spinal Cord Injury Model System (UAB-SCIMS).

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