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Trending Topics- Accessibility in Health Care


Navigating the health care system can be intimidating for anyone, especially when accommodations and equal access come into play. Understanding your options as a patient or guardian of a patient can make or break an individual’s experience but fortunately, there are established resources in place to provide a  smooth experience.

All individuals who are deaf-blind should familiarize themselves with Section 1557, the nondiscrimination provision of the Affordable Care Act (ACA). Section 1557 builds on several long-standing and familiar Federal civil rights laws (ADA, Rehabilitation Act, and Title 16 of the Civil Rights Act). Section 1557 extends nondiscrimination protections to individuals participating in:

  • Any health program or activity which receives funding from the Department of Health and Human Services (HHS);
  • Any health program or activity that HHS itself administers; and
  • Health Insurance Marketplaces and all plans offered by issuers that participate in those Marketplaces.

Simply put: this law requires that health care providers who receive federal funding will provide a Civil Rights Coordinator (504 Coordinator) to assist in a patient’s accommodations. Ideally this is a preemptive measure but the coordinator can also assist with last minute requests or systematic changes based on a consumer’s experience. One thing to note is that this law came into effect in 2010 but began being enforced in October of 2016. Ideally, all hospitals and health care programs have this service in full swing, however, it’s possible that not everyone does at this time. If this is the case, the organization can work with the local ADA center to establish this position.   

In my previous experience in Utah with individuals who are deaf-blind that have utilized the 504 Coordinator, they have been able to set up individualized accommodation plans for their personal hospital experience. This may include having their preferred interpreter scheduled automatically when they schedule an appointment; providing their documentation in large print or braille; adding specific request to their chart so that each provider has access to this information before interacting with the client; etc. Additionally some individuals have worked with their 504 Coordinator to influence environmental and overall accessibility such as, increasing the volume on all elevators to their maximum volume, ensuring website accessibility, and providing staff sensitivity training on how to work with people with disabilities.

What are the takeaways?

  • The first step to accessibility is to locate the person who can implement long-term changes. This stops the need to re-explain accessibility preferences to each professional that interacts with the patient (“frontline”).
  • Language can be a powerful tool in connecting to the right person. Not every frontline staff will know what a 504 coordinator is but they will know who to connect the patient to for a “special accommodation.” If a health care provider is privately funded they may not have this person available, but their compliance officer or your region’s ADA Center may be able to support that program in learning what reasonable accommodations for the patient are.
  • When patients who are deaf-blind identify a need, it is a great opportunity for the State Deaf-Blind Project, HKNC, or other state agencies to partner with that health care provider in training their staff on understanding how to work with people who are deaf-blind.

In my experience, these resources have been very beneficial to those I have worked with. I’m interested to learn of your experiences of accessibility in health care settings and if it was a smooth process or how it could have been improved.

Laura Benge

Posted Jul 16, 2018 by Laura Benge

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Comments (6)

Hi Laura. I would call myself a seasoned HKNC regional rep, but learned several new things while reading your Trending Topic. Thanks for sharing this interesting and helpful information.

Beth Jordan

Posted Jul 30, 2018 by Beth Jordan

Thanks for the feedback Laura! Debra

Debra Pickens

Posted Jul 26, 2018 by Debra Pickens

Hi Mike,
My experience with state projects has been that they are training/technical assistance and dissemination grants- this might include educating and providing families with information about accessibility in health care. When parents speak with me about the work they have done with the project, they express particular appreciation for the resources that the State Deaf-Blind Project provides. Even if a project does not have the capacity to interact with the hospital directly, they will always be a valuable resource to families, which has the added benefit of helping the parent and the SDBP build rapport. My recommendation would be for the coordinator to continue to increase their awareness and knowledge in this area so that they may support families when needed.

Laura Benge

Posted Jul 24, 2018 by Laura Benge

Thank you Debra, one note to add is that section 1557 applies specifically to those health care facilities who receive federal funding (most commonly hospitals) so it may not apply everywhere. How those facilities choose to work with the patient varies from place to place, the law only requires the existence of the 504 coordinator position now how they meet needs. In my personal experience Intermountain Health Care, in Utah, has created individualized accommodation plans for their patients but this is not a plan required everywhere- this was how their coordinator chose to meet the accessibility and accommodation preferences. My suggestion for parents who are looking for a smoother process when their child needs to attend the Dr.'s office is to check with the 504 coordinator and ask them what accommodations can be made for the child. If they would like examples of what other facilities have come up with I am happy to share my experiences. My contact information can be found here:

Laura Benge

Posted Jul 19, 2018 by Laura Benge

Hi Laura,

This is Debra Pickens with the NC Deaf-Blind Project. Thanks for the information and while I am aware of the 504 Plan for accommodations within the educational setting, I am not that familiar with the Individualized Accommodation Plan for healthcare needs. We do help parents with Individualized Health Plans for school.
This information is helpful and I will share it with our parents. We have a lot of parents that are still on the waiting list for Innovations Waiver (Medicaid Program). Some have had to quit their jobs to care for their child. We are still learning about accessibility as an organization, especially with our powerpoint presentations and website. I will review Section 1557 of the Affordable Care Act. Thanks

Debra Pickens

Posted Jul 18, 2018 by Debra Pickens

Hi Laura , thanks for sharing. The state DB projects typically do not provide a direct service to families. As TA provider what role might a state DB project staff person have to change awareness and knowledge relative to meeting a need of a stakeholder ?

Mike Fagbemi

Posted Jul 16, 2018 by Mike Fagbemi

NCDB : The Research Institute : Western Oregon University : 345 N. Monmouth Ave. : Monmouth, OR 97361
Contact Us: 800-438-9376 |

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