For someone with a mental handicap, HIV/AIDS presents a special challenge
that often results in an uphill struggle. People with mild handicaps are
able to adjust and function in all types of competitive employment and with
little modification to their work environment. Many are independent and
function well in communities living side-by-side with their neighbors who
do not have mental handicaps. People with more severe mental handicaps
typically have more difficulty functioning in both work and non-work
settings. Whatever the level of mental handicap, they are people who engage
in sexual activity like everyone else. This article explores the factors
that make HIV prevention, diagnosis, and treatment challenging for people
with mental handicaps and the professionals who serve them.
Challenges to the
Mentally Handicapped Consumer:
Prevention, Diagnosis, and Treatment
Prevention efforts for the mentally handicapped are twofold: (1) to
prevent the HIV-negative client from becoming infected; and (2) to prevent
the HIV-positive client from spreading the infection. Prevention efforts
are typically executed by AIDS educators. Some efforts have been made to
address prevention with a sensitivity to people with mental handicaps.
According to Pat Sutherland-Cohen, an AIDS Educator and Coordinator of
Education and Training at Young Adult Institute (YAI), National Institute
for People with Disabilities, prevention efforts for this population must
have an individual perspective. "We start with what the person already
knows and then ask them, 'What is it that you would like to know?' "says
Sutherland-Cohen. "Many of our clients already have the information.
They've seen the same TV shows, news programs, magazines, etc. that we have
all seen. The first step is getting at how they've encoded these messages.
The second step is then correcting the distortions. This is no easy task,
unless you're specially trained to work with this population."
Great pride is taken by YAI in practicing the belief that the
client should have the majority of the control in the learning situation,
so that the role of the AIDS educator is that of a facilitator in the
discovery process regarding HIV/AIDS. "We value the entire person," says
Sutherland-Cohen. "AIDS education is not just about safer sexual acts, but
also about what's going on in a person's life and what sex means to them.
Without this information, you're not helping them fit the information into
their lives. They won't retain it."
The critical difference in AIDS-prevention education in this
population is that the facilitator must really be sure that the person
understands the information and is not merely compliantly agreeing with the
educator. To help them to retain the information, AIDS educators for the
mentally handicapped make use of visual AIDS and role playing. These
concrete devices assist the facilitator in illustrating important points
about prevention. Those in the prevention field that employ this technique
are considered leaders in their field -- YAI is in the forefront. With the
creation of videos, training manuals, and two theater troops, YAI's AIDS
Education Program has tailored prevention efforts to meet the needs of the
mentally handicapped consumer.
Even the decision of whether to take the HIV test is more complicated for
the person with a mental handicap. This decision must be made with a full
understanding of the consequences of both diagnostic possibilities. A
person with a mental handicap will most likely struggle with the decision
because of their misunderstanding of these consequences. When the person
receives an HIV-positive diagnosis, and necessary social support is not
available to them, their capacity to function is often diminished.
It's during times when a HIV-positive diagnosis is given that the
person is least likely to understand and retain information due to the
volume of information given and the stress associated with the diagnosis.
The source of the stress is rooted in popular misconceptions about
HIV/AIDS. (1) a diagnosis of HIV/AIDS is a death sentence; and (2) you can
become ill at any moment and quickly die the next day. While persons
without mental handicaps might maintain these misconceptions, they most
likely have the cognitive resources to work through the issue and come to a
more realistic evaluation of their situation.
Another source of stress is the shame and stigma associated with
being mentally ill, mentally retarded, developmentally disabled and/or
learning disabled and having HIV/AIDS. The loss of status accompanying the
HIV-positive diagnosis is compounded by other diagnostic problems. As most
people are, those with mental handicaps are very terrified of social
stigma. Stigma results in people being ostracized, ridiculed, and ignored.
And perhaps the worst result of stigma is that the issues associated with
HIV/AIDS are not discussed. Information is not shared and prevention,
treatment, and support services are not accessed.
There are two principle treatment modalities offered to most consumers:
pharmacological and psychological. While the infected person typically
elects the former and refuses the latter treatment, it is widely accepted
that these modalities are intertwined. The decision is very complicated for
mentally handicapped individuals because of the unique thought processes
related to their decision-making. Most decisions in their lives are marked
by lack of information, and in many cases, are impulsively made. Their
interpretations and responses to even instinctual experiences, such as
pain, are in many cases different; thereby leaving them in a precarious
situation. For example, if they do not report pain they might be missing
out on needed treatments. If they elect to use pharmacological treatments,
this presents situations such as information overload, confusion, and
non-compliance with self-administration.
In many instances these consumers are also the victims of too much
information. There is a significant amount of information in the news
regarding treatments, drugs, alternative cures, etc. Disabled consumers are
often left confused and overwhelmed and they need outside help to process
the information. In many instances the help they receive is not good
because it lacks a sensitivity to their compromised condition.
Gary Casella, the Senior Case Manager at Geel Services for AIDS,
states that "a major problem with the services for this population is that
they are funded through Medicaid, which places restrictions on services and
will not pay for all of the new treatments. The information given by the
medical doctors is unclear and not given in a form that is understandable
to the mentally disabled consumer. They're not able to make sense of their
laboratory reports and the lab values reported. The majority of clients who
are mentally disabled are served by Medicaid doctors who spend only a few
minutes with clients conveying a dearth of information in a short span of
time. The consumer is left to digest all of this medical information with
limited cognitive resources."
One of Casella's patients misinterpreted her lab results, mistaking
the amount of her viral load by 100,000. She, and many other patients like
her, could have benefited from a concrete, simplified version of the
information. Casella wishes that there existed an "AIDS Made Simple"
guidebook for persons with such cognitive impairments. In the meantime, he
uses examples from his own experience as an HIV-positive man with his
clients. "This is the best way to be concrete with them, by being an
example," he explains. From a counseling perspective many indigenous
counselors find that using their own experiences as HIV-positive persons is
helpful in putting clients at ease. While this by no means specifies that
all HIV/AIDS counselors be positive, it helps to put a face on the
condition and offers the mentally handicapped individual a visible person
living with HIV/AIDS as a role model.
Information overload is complicated further by confusion regarding
the information. Since many clients are in denial about the seriousness of
their condition, they are not informed consumers about their health care.
"They are an easy sell for alternative remedies and treatments such as
teas, herbs, mega-vitamin therapies, etc." Casella reports. "I have to
help them unpack and sort the fiction from a set of facts which are
changing every day. I have to keep up with what is out there. Even I'm
confused sometimes. I can only imagine what's going on for them."
Aside from the glut of confusing information, the issue of
treatment compliance is compounded by the information-processing deficits
and the nature of the treatments themselves, especially the powerful side
effects. Casella states, "It's difficult to convince someone who is
mentally ill or mentally retarded to continue taking medications that make
them feel ill when they were not feeling that ill beforehand." This type of
consumer needs supervision and constant environmental support in order to
foster compliance. Too often these support services are not out there or
not easily accessible to someone who is not used to advocating for
Another problem with HIV/AIDS services for mentally handicapped
people are the limited amount of services. More services that serve this
particular population are needed: case management services to advocate for
them; special testing counselors to address their special
information-processing needs; and a case manager who can follow them from
testing and diagnosis to treatment, and then living with HIV/AIDS.
Clearly, HIV/AIDS presents a special challenge that often results
in an uphill struggle for prevention, diagnostic, and treatment services
for those with mental handicaps. The lives of mentally handicapped people
are often further complicated by social conditions that occur along with
the mental disabilities. For example, a "downward drift" phenomenon
typically occurs in the chronically mentally disabled as a result of the
worsening of their condition over time. This results in job loss and a
decreased ability to self-preserve. Hopelessness, poverty, drug and alcohol
abuse, and a life of crime sometimes accompany this downward drift.Clearly,
more services with a special sensitivity to the needs of this population
are needed since they represent a high-risk group. Along with more
services, the most important thing that they need, according to Gary
Casella, is "hope."
Dominic J. Carbone, Ph.D., is a developmental psychopathologist based in
New York City at YAI, National Institute for People with Disabilities,
Greenwich Village Multiservice Center, 320 W. 13th Street, NYC, NY 10014.
He can be reached at (212) 645-1616. He has worked for over ten years with
people with mental disabilities and their families. He is on the Board of
Directors of Body Positive and is an active volunteer as well.
Editor's Note: The people in the photographs are not PWA's. They are
assistants helping to demonstrate an HIV Education game used by YAI's AIDS
Back to the May 97 Issue of Body Positive Magazine