They are dry-as-dust words that embody equally arid legalese: Section 504; Title II; Section 1557. But in fact each speaks to a very human concern: the rights of all people to have equal access to services, including health care.
It’s Carol Reagan’s job to pay attention to them every day. Reagan joined University of Colorado Hospital in June 2015 as its first accessibility coordinator. She is responsible for the things that help people with disabilities get the health care they need, from service animals to videophones to interpreters to braille signs to patient rights postings to restroom doors. However varied the work, the goals are basic, Reagan said.
“We must ensure that we are compliant with the laws and that we remove any barriers to access and services for patients,” she said.
More than words
The legal protections for people with disabilities developed across nearly four decades. Section 504 of the 1973 Rehabilitation Act originally prohibited discrimination in programs that receive federal financial assistance from the Department of Health and Human Services. The 1990 Americans with Disabilities Act (ADA) extended that protection, guaranteeing equal opportunities for people with disabilities to participate in all phases of “mainstream” society, including access to health care. Section 1557 of the Affordable Care Act prohibited discrimination in health programs or activities on the basis of race, color, national origin, sex, age — and disability. It also specifically addressed protections for transgender individuals and those with “limited English proficiency.”
A look at the numbing details of the rules and regulations of these acts explains why UCH needs Reagan’s full-time attention. For many people, they are not mere words. They are guarantees of their citizenship. That is why individuals and advocacy groups are increasingly aware of their rights and expect that they be met. That is as it should be, Reagan said.
“The ADA is a civil rights law,” she said. “It’s designed to meet people’s basic needs and understanding what those are is important.”
A hospital’s fundamental aim is to meet the needs of all its patients, but there are also very practical considerations for complying with equal-access laws. An organization that is “non-compliant” with Section 504 or a provision of the ADA – not providing an interpreter for a person who needs one, say – could be ordered by the Office of Civil Rights to develop a remediation plan and submit to monitoring for a set period of time. The most severe penalty for non-compliance is loss of federal funding and fines of up to $75,000 for a first violation, Reagan said.
“It’s worrisome from both a regulatory and a patient care standpoint when organizations don’t always follow the regulations and the law,” said Carolyn Sanders, RN, PhD, chief nursing officer for UCH. “Consumers are a lot more informed and they expect that a hospital, of all places, will accommodate their needs.”
The key for UCH, which receives federal funds from the Centers for Medicare and Medicaid Services, is to be proactive, Reagan said, and be prepared to show the Office of Civil Rights that it has demonstrated “good-faith efforts” to address potential barriers and noncompliance and provide a process for individuals to file complaints and grievances.
Gaps in meeting those needs may not be immediately apparent. Sanders recalled a patient with limited vision asking for after-visit summary instructions to be printed with a larger font – a request the unit couldn’t immediately meet. After that incident, Sanders said she contacted colleagues at Memorial Hospital in Colorado Springs for an analysis that produced three pages’ worth of items that UCH should address going forward to meet the needs of patients with disabilities. That showed her it was time for UCH to join Memorial and UCHealth’s hospitals in northern Colorado in creating the ADA coordinator position that Reagan now fills.
“We needed someone to pay attention to and maintain a focus; someone who would own it, assume accountability and stay up on the regulations,” Sanders said.
While the rules are written in black and white, they often enter gray areas, Reagan said. She noted that disabilities are not monolithic; the needs of the deaf and those who are profoundly hard of hearing, for example, may be quite different.
The ADA asks that individuals shed assumptions about those they encounter and “understand and recognize the individual for who he or she is and not simply for their disability,” Reagan said. An important part of that is recognizing that some disabilities, such as post-traumatic stress disorder and other psychological issues, are not always apparent, she added. “We can’t assume that because we don’t see someone’s disability that they don’t have one.”
The service animal is perhaps the most visible symbol of help for patients with disabilities – and yet it’s also the most frequent source of questions and misunderstanding, Reagan said. The basics are clear. In public accommodations, such as medical offices and hospitals, only dogs and miniature horses are recognized as service animals. If a patient brings either animal into the hospital, staff can ask only two questions: Is it a service animal? And, if so, what task is it trained to perform to assist an individual with a disability?
“It’s important for staff to know the questions they are allowed to ask,” Reagan said. But beyond that, she added, the responsibility for taking care of the animal – controlling, feeding, exercising, and cleaning up after it – falls squarely on the handler. The animals can be excluded for aggressive behavior, and they are not permitted in operating rooms and procedural suites or in any units that treat immunocompromised patients, such as the Burn Center or BMT Unit.
The hospital added a “special needs” tab in the Epic electronic health record last month to identify patients who have service animals, Reagan said. She is working on revising the policy for the animals to clarify the expectations of both staff and handlers.
It will also be important for the hospital to upgrade its technology to assist the disabled, Reagan said. That includes providing amplifiers for phones; replacing teletypewriters, which she called “archaic,” with videophones; and offering blind patients apps for downloading audible consent forms. More broadly, the hospital needs a strategic plan for identifying these and other potential barriers and removing them, she said.
Patients themselves will be a valuable resource in meeting these goals. Reagan said she wants to create an “access committee” with input from members of the disabled community. The hospital’s Patient and Family Centered Advisory Council, which includes patient representatives, could also provide valuable insight about the needs of disabled individuals, Sanders said.
Reagan, Sanders added, has been up to the challenge handed to her a little more than a year ago. “Carol dove into the regulations and has been self-directed, with a high level of compassion for our patients,” Sanders said.