Know your rights when advocating for those with special needs

Having a family member in the hospital is trying enough, but when that family member has a cognitive or developmental disability, the worries are compounded. The patient may not understand the treatment, act out due to fear or not be able to adequately communicate his or her needs or consent to treatment.

Fortunately, the Illinois Department of Public Health has determined those with intellectual and/or developmental disabilities or cognitive impairments are entitled to have an advocate at their bedside. That may be a parent, guardian, caregiver or paid professional such as a patient advocate. That's important because even the best, most caring hospital staff may miss or misinterpret the needs of a patient with disabilities or impairments.

Hospital staff may understand, for example, that a patient has a cognitive disability, but they won't be in tune to the nuances of that patient's communication style. Is the patient really in severe pain or are they just saying that? A parent or caregiver would be able to recognize that behavior while a health professional who doesn't know that patient probably would not. And the outcome could lead to improper or even dangerous results.

In the early days of the COVID-19 pandemic when hospitals began restricting visitor access to hospitals, the Illinois Department of Public Health issued a bulletin clarifying its position on the presence of support people in health care facilities, including hospitals. It noted that, "Individuals with intellectual and/or developmental disabilities may require accommodations in a health care facility that include permitting the presence of a support person, such as a guardian, family member, caregiver or paid support worker, provided that essential precautions can be taken to contain the spread of infection." The guidelines further noted that these patients can have up to two people designated as their advocates but only one person at a time would be permitted at bedside.

The bulletin makes clear these steps are necessary to facilitate communication with hospital personnel, obtain medical history, help the patient take part in their care planning, secure informed consent for treatments, and provide both support and strategies to reduce anxiety and possible harmful behaviors.

Knowing the law is important to ensure staff at hospitals and other health care facilities follow this protocol, and that you advocate on behalf of your family member if they don't.

I recently saw the devastating results of restricted access to a patient. A 66-year-old man with cognitive and mental health disabilities had undergone cancer surgery and needed to complete his recovery in a senior care community. Because of his disability, he could not adequately communicate his needs, and the facility was limiting access to family and private advocates. He had initially been restrained "for safety reasons," and although we were able to successfully advocate for having the restraints removed, a few days later his condition deteriorated rapidly, and the man had a cardiac arrest and died. If the facility had notified his advocate or family of this change, or permitted them to be with him in person, his death could possibly have been prevented.

There are other concerns, too. With the recent surge in coronavirus cases and hospitals filled to capacity, discussions about rationing care may have worried family members of those with special needs. These families should rest assured, though, that the law is on their side. In a bulletin titled "Civil Rights, HIPAA and the Coronavirus Disease 2019 (COVID-19)" issued on March 28 by the U.S. Department of Health and Human Services, the agency made clear that people with disabilities "should not be put at the end of the line for health services during emergencies."

While family members of people in these special populations and those who care for them are grateful for these clarifications, there is still some uncertainty ahead. Although we now have an effective vaccine for the coronavirus, it is unclear when much of the population - including those with disabilities and cognitive impairments - will receive the vaccines. With an uncertain timetable of how long it will take to vaccinate the majority of U.S. residents, restrictions on visitation at hospitals and other health care facilities are likely to persist for months to come. That's why it's important to know your rights, know your family members' rights and advocate for those who can't advocate for themselves.

• Teri Dreher is a board-certified patient advocate. A critical care nurse for more than 30 years, she recently founded Seniors Alone Guardianship & Advocacy Services (, a not-for-profit organization that serves the area's senior orphans. She also is the founder of NShore Patient Advocates, Contact her at (312) 788-2640.

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