The daughter is medically fragile and also has autism. The father called the mom and said that the nurse was kicking him out because visiting hours were over. She told him, “Hold on, in the left pocket of your folder of her medical records is a memo from the State Department of Health which allows a patient with a disability to have a support person with them at any time. You are not a visitor.”
During the COVID pandemic, initially hospitals and doctors’ offices were only allowing the patient in. This meant that people with disabilities were on their own, even if they were unable to communicate with medical professionals. Disability advocates pushed back and now people with disabilities can have a “support person” with them at all times, if needed.
It is important for families and friends not to just say they are the parent or caregiver, but rather a “support person” for the individual with a disability. You are not a “visitor.” You are a support person.
In the story above, the patient was refusing medications because she knew what she was supposed to take, and the doctors kept changing her meds in the hospital. She was not cooperating with labs and bloodwork because she was tactile defensive (hypersensitivity to touch). This young adult with autism was also refusing to hold still for any testing like EKGs or CT scans due to anxiety, rendering testing useless.
The next day, the father showed the security guards the same memo, and although it took 45 minutes to clear him, he was allowed in earlier than visiting hours to support his daughter. Once there, he explained the medication changes to her, and she took her meds. He asked for Emla (numbing) cream, and she did her bloodwork. He kept her calm during medical testing, so they were able to find the cause of her severe illness (which was life-threatening sepsis).
It is mutually beneficial for the hospital/doctor and the patient/family to have the support person there, because the outcomes are better.
Disability Rights NJ has a section on their website devoted to this issue (see Resources). The U.S. Department of Health and Human Services reaffirmed the rights of people with disabilities under Section 504 of the ADA (Americans with Disabilities Act) and Section 1557 of the ACA (Affordable Care Act). This was true even during the public health emergency during the pandemic. It may be helpful for families to keep a copy of the webpage or link in case it is needed. If families or self-advocates are having problems allowing a support person into a medical facility, they can file a complaint with the HHS Office for Civil Rights. Fortunately for this patient, her mother was a healthcare advocate and knew her rights. But if it happened to this family, it must be happening to other families, including families who are unaware of their rights in these challenging situations.
Self-advocates and their families need to know that there are disability protections in place, established by laws including the ADA and ACA, so that they can have a support person accompany them during medical treatment.
I’ll Be There : Resources for Support Persons
Disability Rights NJ
www.drnj-covid.org/critical-issues/hospital-visitation-policies
U.S. Dept. of Health and Human Services
Civil Rights for People with Disabilities
www.hhs.gov/civil-rights/for-providers/civil-rights-covid19/disabilty-faqs/index.html
Office of Civil Rights Complaints
www.hhs.gov/ocr/complaints/index.html
ABOUT THE AUTHOR:
Lauren Agoratus, M.A. is the NJ Coordinator for Family Voices, NJ Regional Coordinator for the Family-to-Family Health Information Center, and Product Development Coordinator for RAISE (Resources for Advocacy, Independence, Self-Determination, and Employment). She also serves as NJ representative for the Caregiver Community Action Network as a volunteer. Nationally, Lauren has served on the Center for Dignity in Healthcare for People with Disabilities transplant committee (antidiscrimination), Center for Health Care Strategies Medicaid Workgroup on Family Engagement, Family Advisor for Children & Youth with Special Health Care Needs National Research Network, National Quality Forum-Pediatric Measures Steering Committee, and Population Health for Children with Medical Complexity Project-UCLA. She has written blogs and articles nationally, including publications in 2 academic journals (https://pubmed.ncbi.nlm.nih.gov/?term=agoratus+l). Lauren was named a Hero Advocate by Exceptional Parent Magazine (www.epmagazine.com Archives June 2022).
Read the article here.