May 2, 2018
Assembly Hearing on A.2383A
New York City Hearing
Assembly Hearing Room
250 Broadway, 19th Fl.
Susan M. Dooha, J.D.
Executive Director
Center for Independence of the Disabled, NY
Discrimination and biases toward people with disabilities by medical professionals and the health care systems is endemic in New York. Many people with disabilities will tell you that they are not seen or heard by most medical professionals and their lives are devalued by them. They are three times as likely as their nondisabled peers to be denied care. They are four times as likely as people with no disability to be treated poorly. Treatment for serious illness in people with disabilities is often not aggressive. Concerns or desires regarding health care options are dismissed. It is assumed that their quality of life is poor and not worth extending. They are treated with disrespect and less likely to be involved in treatment decisions or have treatment options explained to them.
My family has been affected by this kind of discrimination since 1985. My husband, Rob Fasano, is a person with disabilities due to treatment for cancer as a teen/young adult. His spine was damaged, he has had paralysis, and he has nerve damage. He has difficulty walking and standing. Due to other functional limitations he is not able to work. He also had a rare genetic disorder.
1985 was the first time that a doctor decided that Rob, as a person with a disability, had a life that was not worth living and that he should just die. The doctor worked at a major NYC cancer treatment facility. He acknowledged that my husband needed immediate treatment and was at life threatening risk due to hemorrhaging. He told me that my husband should go home without treatment. This would have meant he would die. The reason, the doctor told me, was that our insurance wasn’t “good enough” and the doctor decided that Rob’s life was not worth the debt that he would incur. To him, this meant that treatment wasn’t “worth it” for someone with a disability whose quality of life must be poor. I refused to permit the hospital to discharge Rob without treatment. In desperation in the early hours of the morning, colleagues contacted the NYS Department of Health’s Commissioner and he directed the Doctor to provide treatment, saying to us that this is not the first time that this problem has arisen. Because the Commissioner ordered that the hospital treat Rob, he was treated. He survived until 1990 when he needed a liver transplant. That transplanted organ survived 15 years until 2005.
In 2005, when Rob’s first transplanted liver failed, he sought treatment because he wanted to live. We had a 6 year old daughter and from Rob’s perspective he was highly motivated to live for her. He was in a severely weakened state between July and December of that year and in the hospital much of that time. Without a transplant he would certainly die.
Even though Rob had been hospitalized for months on the transplant ward of a New York City hospital that had a transplant center and was accepted to be listed for a transplant, we had never met the head of the transplant team. Suddenly one day, the head of the transplant team swept into Rob’s room with an entourage and announced to Rob that he knew that Rob wanted to die. He had never spoken to Rob before, he asked no questions, he provided no explanation of his statement despite our questions. There had been no indication from either Rob or me that this was so. Rob did not want to die rather it was the doctor’s notion that he knew what my disabled husband was thinking and feeling without having met him and without asking or discussing treatment options. The doctor ultimately abandoned Rob’s care in December. At that point, we took an air ambulance to another city where a doctor who knew Rob and had talked with him understood that Rob wanted treatment and to live. We went to that City and Rob was examined and found to be in need of and capable of sustaining surgery for a new liver. The doctor performed a transplant within a week of our arrival and Rob lived.
I’m struck by the way doctors have treated Rob. They made assumptions that Rob wanted an exit from life and took specific actions/made specific statements that attempted to persuade him that he should die. They withheld treatment and assumed that his life was not worth living. If we had followed their advice, Rob would be dead. Instead he is the proud father of a college-age daughter, whom he has helped to nurture and grow. He is a prize-winning storyteller on the Moth, you can catch him on YouTube.
But many others are not so fortunate. They do not necessarily have family members who can help advocate for them when they are seriously ill. Or, the relationship with family is strained and the family feels burdened. People with disabilities sometimes avoid care because the stigma and discrimination they experience when they seek it is a deterrent to seeking care. They are not given routine diagnostic screenings, counseled about preventive care, are diagnosed late and not treated aggressively.
The healthcare environment in New York State is poisoned by this kind of discrimination. Discrimination pervades decision-making regarding public health, the built health environment, oversight of health providers, and education for health practitioners. Incentives to institutionalize individuals with disabilities have been created and act as the default in care. Sufficient care in the community is extremely difficult to obtain. People with disabilities have been forced to go to federal court to vindicate their civil rights in order to obtain health care in New York.
Given this pervasive discrimination, I do not see how one can consider assisted suicide. Efforts are lacking or at best meager to include a focus on people with disabilities in public health planning activities. Health practitioners are not trained, despite the existence of training models and a literature about the importance of training health practitioners regarding civil rights and disability literacy.
Health care systems, laboratories, pharmacies, doctor’s offices are inaccessible and no penalties accrue as a result of this–they are permitted to receive State funding while they blatantly ignore the civil rights of people with disabilities.
I do think that discrimination in health care would be a worthy subject for the legislature and health agencies to address. Otherwise, I would say that people with disabilities have a well-founded belief that their lives will be at risk unnecessarily. They will be encouraged to end their lives when treatment could sustain them, when care at home could be provided, respite for family members could be part of a plan, pain relief could be administered, therapies could assist with alternate ways to handle daily living, and depression could be alleviated, suicide prevention services could be delivered. It used to be the case that people with disabilities died young. Because of advances in treatment, just like the rest of society, people with disabilities are living longer and more productive lives. However, attitudes have not caught up and remain a significant barrier to care and also create a threat that care will be of poor quality or withdrawn.
We live with a health system in New York that in many ways refuses to recognize that people with disabilities experience unequal access to health care. Making people with disabilities virtually invisible in the health prevention agenda continues to lead to health disparities. Discrimination by health institutions and practitioners in treatment continues to lead to health disparities. Still, there is little action by the State as a regulator and purchaser of health care.
- The State does not provide sufficient guidance on education and licensing of the health professionals to remove barriers to appropriate care for people with disabilities.
- Hospitals and other health care providers are given little guidance regarding removal of architectural, communications, and attitudinal barriers to care.
- The State does not survey facilities or provide detailed information regarding where an individual can locate a raising and lowering exam table, a laboratory without steps, a changing room that a wheelchair user can use, alternate formats, interpretation and other key accommodations and modifications of policies and physical plants to ensure that they have equal opportunity to seek care and receive it without discrimination. The state expects individuals to rely on self-attestation regarding only “wheelchair accessibility” (which is not defined) by providers. We know from our experience with litigation that such attestations are unreliable.
- Health practitioners are not required to and do not receive adequate training regarding disability civil rights and how it relates to their specific functions and practices.
- The State does not require or even incentivize installation of accessible diagnostic medical equipment for which access standards were approved by the federal Access Board.
- It takes actions that are directly detrimental to people with disabilities, such as providing incentives for managed long-term care plans to institutionalize people with disabilities.
There seems to be a lack of interest in addressing discrimination against and health disparities experienced by people with disabilities on the part of policymakers and lawmakers.
Instead, we are forced to live in an environment where litigation—hospital by hospital, lab by lab—appears to be the only path to change in health systems.
Health care practitioners experience attitudinal bias that goes unchallenged.
People with disabilities regularly experience covert and overt bias and discrimination in their health care. The health practitioners treating them make false assumptions regarding their lives and that has a negative impact on care for people with disabilities – and often results in the refusal to treat at all.
Studies show that negative attitudes regarding disabilities are reported by medical students, nursing students, other health profession students, physicians and nurses. Medical students and residents view people with disabilities as more difficult or less desirable as patients. People with disabilities are infantilized and are seen as unable to contribute to their own care and to make decisions.
A particular bias is that experiencing disability compromises the quality of life. When asked about their views of their lives if they had a paralyzing injury, doctors say that their lives would not be worth living. This contrasts sharply with the study showing that 92% of spinal cord injury survivors experience having a good quality of life. If a health practitioner views life with a disability as not worth living, it will affect the choice of treatment options and the aggressiveness of treatment. in fact, health practitioners question the aggressive treatment of children with severe disabilities, those with spinal cord injuries, individuals with intellectual disabilities who acquire breast cancer treatment or need an organ transplant.
Health care providers’ attitudes towards disability affect communication and create breakdowns in communication. Deaf people report that they do not understand their health practitioner. Although use of an ASL interpreter has been shown to be associated with greater use of preventive care, interpretive services are not provided. People who are wheelchair users or have speech disabilities report that their health practitioners do not speak to them if there is a care attendant or relative in the room, infantilizing them. People with disabilities are assumed to be asexual and it is assumed that women with disabilities do not need screening for cervical cancer or breast cancer. It is assumed that an individual’s disability is always the topic of care and therefore individuals presenting for other reasons experience delays or a lack of care or treatment.
The upshot of this is that people with disabilities often avoid care and treatment. They receive less aggressive treatment. They are diagnosed at later stages of disease and have higher mortality rates.
The healthcare built environment is inaccessible.
“Because the health care facility had no exam tables that raise and lower, Rose was forced to undergo a pap smear seated in her wheelchair.”
“Sylvia needed tests at the hospital. However, the dressing rooms at the hospital weren’t accessible and so she had to undress and put on her hospital gown in a public area.”
Civil rights laws require that health care providers, hospitals and other medical spaces provide physically accessible facilities, ensure effective communication for people who are Deaf or blind, and modify policies and procedures to ensure equal access.
Strategies for increasing health equity.
In 2017, a settlement agreement with a major health care system in New York City reveals how pervasive discrimination is and how much is required to remedy it. The settlement requires:
- Complete ADA compliance surveys of all sites;
- Temporary and permanent timelines for all remediation of site barriers including hallways, public spaces, exam rooms, changing rooms, pharmacies, testing areas;
- Purchase of and staff training on Accessible Diagnostic Medical Equipment.
- Accessible formats for all communications;
- Effective communications for people with all types of disabilities;
- Clear and accessible grievance and complaint procedures;
- Staff training on ADA compliance standards with timelines;
- Accommodating people with disabilities who use service animals;
- Flexibility in appointments, help filling in forms and other modifications related to patient procedures;
Other recent Department of Justice settlement agreements have included:
- Adoption of policies and procedures to ensure appropriate auxiliary aids and services, including qualified interpreters;
- Hiring an ADA coordinator;
- Creation of an Environment of Care committee;
- Hiring an ADA consultant on policy and training; an ADA equipment expert and an architectural expert to identify and remediate architectural barriers;
- Review of all policies and procedures relating to patients with disabilities including emergency evacuation procedures;
- Training and reporting requirements;
- Training for all providers by people with disabilities on:
- Determining the need for an accommodation;
- Transferring and positioning techniques;
- Literacy regarding individuals with various disabilities, including cognitive disabilities;
- Identifying and locating examination and procedure rooms that are accessible;
- Identifying where accessible equipment is and how to use it;
- How to use transfer and positioning aids and equipment.
- Provide a process for complaining about the failure to provide a reasonable accommodation, effective communication or failure to remove barriers;
- Guidance for all staff regarding reasonable accommodations and access standards.
I would encourage the State as a purchaser and regulator and the Legislature if necessary to adopt these approaches and others that would ensure compliance with disability rights laws before any consideration of assisted suicide. We need to value the lives of people with disabilities and their rights in making health care decisions before we open the door to assisted suicide by a medical system that often thinks that the lives of people with disabilities are not worth saving.
Now is not the time to enable medical practitioners, health systems, or health payers to have the power to grant medically assisted suicide when people with disabilities are institutionalized, undertreated, disbelieved, subject to discriminatory treatment and where financial incentives exist to end their lives.