Download Topic - Center for Development of Human Services

Living with HIV/AIDS: Exploring Impact in Physcial, Psychological and
Economic Domain
Training and education of medicaid workers and importance linking clients with
appropriate mental health services and medicaid-related programs
Charlene Vetter, Ph.D. student
Counseling, School Educational Psychology
Baldy Hall
New York State University at Buffalo
Jim Donnelly, Assistant Professor
Counseling, School Educational Psychology
Baldy Hall
New York State University at Buffalo
Sally Speed, Sally Speed, Director, NYS Medicaid Training Institute
Award: 34963
Project: 1044887
Task: 2
Appointment period: January 1, 2005 to June 30, 2005
Award: 31177
Project: 1037112
Task: 2
Appointment period: August 23, 2004 to December 31, 2004
© 2005 CDHS/Research Foundation of SUNY/BSC
Summary
This reference manual represents a summary of basic information, terminology, and
informational resources relevant to HIV/AIDS-related issues that affect the quality of life
for HIV-positive individuals and their caretakers. The tables included in this manual are
organized into four main categories: Table 1) HIV/AIDS-related symptoms, illnesses,
and treatment side effects (basic definitions of commonly used terms, physical challenges
of living with HIV/AIDS); Table 2) HIV/AIDS-related psychological issues
(psychological challenges associated with living with HIV/AIDS); Table 3) HIV/AIDSrelated psychosocial issues (social challenges associated with living with HIV/AIDS );
Table 4) HIV/AIDS-related economic issues. (financial issues associated with
HIV/AIDS, medical insurance coverage, Medicaid-related programs designed to assist
HIV-positive individuals).
The primary focus of Table 3 (pertaining to HIV-related psychosocial issues) is
societal stigma, discriminatory behavior, and illness disclosure issues. Several researchers
have found that these factors may affect quality of life in many areas. These include
accessing services, making decisions related to disclosing HIV-positive status, and making
choices related to employment (e.g. disclosure of illness at work, asking employers for
accommodations). Unlike many other types of disease, stigma and discrimination add to
burden of coping with the health-related challenges of being HIV-positive. In helping to
assist HIV-positive individuals and their caretakers, it is important for Medicaid workers to
have awareness of issues such as stigma and discrimination that
may become barriers to clients receiving needed medical, mental health, social, and
financial services.
© 2005 CDHS/Research Foundation of SUNY/BSC
This reference manual is not intended to be an exhaustive representation of physical,
psychological, psychosocial, and economic issues related to HIV/AIDS, but is intended to
serve as an introduction to important topics in each of these categories. This manual
includes references for further reading in each topic area and a list of internet
resources/website site addresses to obtain more in-depth, detailed information.
© 2005 CDHS/Research Foundation of SUNY/BSC
HIV/AIDS Reference Manual Table 1: HIV/AIDS-Related Symptoms, Illnesses, Treatment Side Effects Page 1 of 20
Topic
HIV/AIDS-Related Symptoms,
Illnesses, Side Effects
AIDS (Acquired Immune Deficiency
Syndrome
Explanation
Impact on Daily
Functioning
Training/Practice
Recommendations
A late stage of HIV disease.
According to the Centers for
Disease Control and
Prevention (CDC,
www.cdc.gov/hiv/dhap), a
person with HIV infection
has AIDS when he or she:
Impact on functioning will
be determined by specific
diagnoses of AIDS-defining
illnesses (please see
definition below)
Training and education of
Medicaid Workers:
Need for workers to be
knowledgeable of criteria
necessary for an AIDS
diagnosis, and awareness
that AIDS-related illnesses
are highly variable across
patients.
1) has a CD4 cell count (a
way to measure the strength
of the immune system) that
falls below 200. A normal
CD4 cell count is 500 or
higher. OR 2) develops any
of the specific, serious
conditions - also called
AIDS-defining illnesses that are linked with HIV
infection IMPORTANT
NOTE: Once a diagnosis of
AIDS is assigned, a patient
remains classified as having
AIDS even if CD4 cell count
shows fluctuations above
200.
(www.cdc.gov/hiv/dhap)
© 2005 CDHS/Research Foundation of SUNY/BSC
HIV/AIDS Reference Manual Table 1: HIV/AIDS-Related Symptoms, Illnesses, Treatment Side Effects Page 2 of 20
Topic
Explanation
AIDS-defining illness
A condition (e.g.,
Pneumocystis carinii
pneumonia, toxoplasmosis,
Kaposi's sarcoma) that is
included in the Center for
Disease Control and
Prevention's CDC definition
of AIDS.
(www.cdc.gov/hiv/dhap)
Impact on Daily
Functioning
Impact on functioning will
be determined by specific
diagnoses of AIDS-defining
illnesses
© 2005 CDHS/Research Foundation of SUNY/BSC
Training/Practice
Recommendations
Training and education of
Medicaid Workers:
Need for workers to be
knowledgeable of criteria
necessary for an AIDS
diagnosis, and awareness
that AIDS-related illnesses
are highly variable across
patients.
HIV/AIDS Reference Manual Table 1: HIV/AIDS-Related Symptoms, Illnesses, Treatment Side Effects Page 3 of 20
Topic
Explanation
AIDS related complex (ARC)
(Early Symptomatic HIV infection)
1. A group of common
complications found in early
stage HIV infection. They
include progressive
generalized
lymphadenopathy (PGL),
recurrent fever, unexplained
weight loss, swollen lymph
nodes, diarrhea, herpes, hairy
leukoplakia, fungus infection
of the mouth and throat
and/or the presence of HIV
antibodies.
2. Symptoms that appear to
be related to infection by
HIV. They include an
unexplained, chronic
deficiency of white blood
cells (leukopenia) or a poorly
functioning lymphatic system
with swelling of the lymph
nodes (lymphadenopathy)
lasting for more than three
months without the
opportunistic infections
required for a diagnosis of
AIDS. (www.aegis.com)
Impact on Daily
Functioning
Fever, diarrhea, and
infections may cause
weakness, fatigue, physical
pain and discomfort
© 2005 CDHS/Research Foundation of SUNY/BSC
Training/Practice
Recommendations
Training and education of
Medicaid Workers: Need
for workers to be aware of
ways in which early-stage
HIV infection is manifested
and awareness that daily
functioning may be
impacted soon after
infection.
HIV/AIDS Reference Manual Table 1: HIV/AIDS-Related Symptoms, Illnesses, Treatment Side Effects Page 4 of 20
Topic
Explanation
AIDS dementia complex
(HIV-associated dementia or
HAD
A degenerative neurological
condition attributed to HIV
infection, characterized by a
group of clinical
presentations including loss
of coordination, mood
swings, loss of inhibitions,
and widespread cognitive
dysfunction. It is the most
common central nervous
system complication of HIV
infection. Characteristically,
it manifests itself after the
patient develops major
opportunistic infections or
AIDS-related cancers.
However, patients can also
have this syndrome before
these major systemic
complications occur. The
cause of ADC has not been
determined exactly, but it
may result from HIV
infection of cells or
inflammatory reactions to
such infections
(www.aegis.com)
Impact on Daily
Functioning
HAD may affect cognitive
functions such as memory,
ability to concentrate, may
cause mood swings, and may
affect physical coordination
© 2005 CDHS/Research Foundation of SUNY/BSC
Training/Practice
Recommendations
Training and education of
Medicaid Workers: Need
for workers to be aware of
how HAD may impact
abilities/capacities to
function in the workplace
HIV/AIDS Reference Manual Table 1: HIV/AIDS-Related Symptoms, Illnesses, Treatment Side Effects Page 5 of 20
Topic
Explanation
opportunistic infection (oi)
An illness caused by a
microorganism that usually
does not cause disease in
persons with healthy immune
systems, but which may
cause serious illness when
the immune system is
suppressed. Common OI in
HIV positive people include
Pneumocystis carinii
pneumonia (PCP),
Mycobacterium avium
complex (MAC) and
cytomegalovirus (CMV)
infection.
(www.aegis.com)
Impact on Daily
Functioning
Impact on daily functioning
depends on the specific
opportunistic infection
diagnosed (e.g. PCP causes
symptoms such as weakness,
respiratory distress).
© 2005 CDHS/Research Foundation of SUNY/BSC
Training/Practice
Recommendations
Training and education of
Medicaid Workers: Need
for workers to be aware that
1) HIV does not cause
illness per se, but rather
weakens the immune
system, making the
individual vulnerable to
illnesses such as OIs.
2) The presence of an OI is a
likely indicator that a patient
has progressed to an AIDS
diagnosis.
HIV/AIDS Reference Manual Table 1: HIV/AIDS-Related Symptoms, Illnesses, Treatment Side Effects Page 6 of 20
Topic
Explanation
AIDS-related cancers
Several cancers are more
common or more aggressive
in persons living with HIV.
These malignancies include
certain types of immune
system cancers known as
lymphomas, Kaposi's
Sarcoma, and anogenital
cancers that primarily affect
the anus and the cervix. HIV,
or the immune suppression it
induces, appears to play a
role in the development of
these cancers.
(www.aegis.com)
The involuntary weight loss
of 10 percent of baseline
body weight plus either
chronic diarrhea (two loose
stools per day for more than
30 days) or chronic weakness
and documented fever (for 30
days or more, intermittent or
constant) in the absence of a
concurrent illness other than
HIV infection.
(www.aigis.com)
AIDS Wasting Syndrome
Impact on Daily
Functioning
Impact on daily functioning
depends on the specific
cancer diagnosis, and on the
side effects associated with
the treatment approach (e.g.
nausea is a possible side
effect of chemotherapy).
Training/Practice
Recommendations
Training and education of
Medicaid Workers: Need
for workers to be aware that
HIV-positive individuals are
1)more like to be diagnosed
with cancers that effect the
immune system than the
general population
2) Symptoms of cancer and
side effects of treatment can
greatly effect an individual’s
ability to function on a daily
basis.
Daily functioning may be
impacted by weakness,
fatigue due to the body
inability to fully
absorb/utilized nutrients.
Training and education of
Medicaid Workers: Need
for workers to be aware that
wasting syndrome can affect
all areas of functioning,
(e.g. cognitive, physical).
© 2005 CDHS/Research Foundation of SUNY/BSC
HIV/AIDS Reference Manual Table 1: HIV/AIDS-Related Symptoms, Illnesses, Treatment Side Effects Page 7 of 20
Topic
Explanation
Side Effects of Highly Active AntiRetroviral Therapy (HAART)
Possible side effects of
HAART include:
fever, nausea, diarrhea,
fatigue,liver problems,
diabetes, fat maldistribution
(lipodystrophy syndrome),
high cholesterol,decreased
bone density, increased
bleeding in patients with
hemophilia.
(www.aegis.com)
NOTE: HAART treatment
is the most common treatment
approach and involves taking a
minimum of three anti-HIV
medications.
Impact on Daily
Functioning
The side effects of HAART
can cause serious impairment
to an individual’s ability to
perform daily activities such
as shopping, meal
preparation, taking public
transportation.
Some side effects (such as
nausea, diarrhea) make it
difficult to be away from
home for any length of time.
© 2005 CDHS/Research Foundation of SUNY/BSC
Training/Practice
Recommendations
Training and education of
Medicaid Workers: Need
for workers to be aware that
1)treatment side effects can
affect all areas of
functioning,
(e.g. cognitive, physical).
2) Side effects are highly
variable across individuals
and may range from mild to
severe.
HIV/AIDS Reference Manual Table 1: HIV/AIDS-Related Symptoms, Illnesses, Treatment Side Effects Page 8 of 20
Topic
Explanation
Impact on Daily
Functioning
Training/Practice
Recommendations
Psychological Issues Related to
HIV/AIDS
Psychiatric disorders such as
depression and substance
abuse issues commonly
occur in HIV-positive
individuals (see Bing,
2001,Kemppainen, 2001).
Disorders such as depression
can affect motivation to
adhere to treatment
regiments as well as impair
ability to function on a daily
basis (e.g. desire/energy to
perform self-care activities
may be affected).
Training and education of
Medicaid Workers: Need
for workers to be aware that
for many HIV-positive
individuals, mental health
concerns and psychological
disorders add to the burden
of living with the disease.
Workers also need to be
aware of the importance of
linking clients with
appropriate mental health
services.
Other articles relevant to this topic:
Miles (1997)
Demi et al (1997)
Demi et al (1998)
Sherbourne et al (2000)
© 2005 CDHS/Research Foundation of SUNY/BSC
HIV/AIDS Reference Manual Table 1: HIV/AIDS-Related Symptoms, Illnesses, Treatment Side Effects Page 9 of 20
Topic
Explanation
Anxiety related to unpredictability
of HIV-related illnesses/treatment
outcomes
HIV-related illness is nonlinear and individuals can
unpredictably experience
symptom-free and
symptomatic periods.
People who respond well to
treatment may experience
longer periods of relative
good health and their
progression to an AIDS
diagnosis will likely be
slower. Even during
healthier periods, however,
the uncertainty of how long
the effects of the treatment
will last may cause distress
for these individuals in many
areas of their lives. This may
present obstacles to making
important life decisions about
personal and professional
future goals such as whether
to have a family, pursue
education, or attempt to
become employed. See
Bogart et al (2000) and
Rabkin et al (2000).
Other articles relevant to this topic:
Brashers et al (1999)
Selwyn & Arnold (1998)
Rabkin & Fernando (1997)
Crandall & Coleman (1992)
Impact on Daily
Functioning
Impact of anxiety on daily
functioning will vary
depending on whether
symptoms of anxiety are
mild, moderate, or severe.
© 2005 CDHS/Research Foundation of SUNY/BSC
Training/Practice
Recommendations
Training and education of
Medicaid Workers: Need
for workers to be aware that
the unpredictability of HIVrelated illness and treatment
outcomes presents a
challenge to service
providers to determine what
kinds of services are needed
to assist individuals in
coping with multiple
stressors and making major
life decisions.
HIV/AIDS Reference Manual Table 3: HIV/AIDS-Related Psychosocial Issues Page 10 of 20
Topic
Psychosocial Issues related to
HIV/AIDS
Social Stigmatization/Disclosure of
HIV-Positive Status
Other articles relevant to this topic:
Herek et al (2002)
Chandra et al (2003)
Explanation
Impact on Daily
Functioning
Training/Practice
Recommendations
An emotional challenge of
living with HIV that does not
appear to be associated with
other types of chronic illness
is the social stigma
surrounding the disease. The
stigma may partially be a
consequence of the
epidemic’s early association
with homosexuality. In their
article about sources of
societal stigmatization of
HIV/AIDS, Herek and Glunt
(1988) suggest that it arises
from two main factors: the
identification of the illness as
serious and life-threatening,
and the association of the
disease with groups that were
already socially stigmatized
prior to the epidemic,
specifically homosexual men
and intravenous drug users.
Fear of being discriminated
against can impact many
areas of life, including
influencing decisions
related to disclosing illness
to family, friends,
employers, and service
providers.
Training and education of
Medicaid Workers: Need
for workers to be aware that
the experience of societal
stigma/discriminatory
behavior can have a negative
affect on life satisfaction by
hindering access to social
support, medical care, and
social services for HIVpositive individuals and
their families/caretakers. It
is important that workers
provide support, advocacy,
and guidance related to
issues of disclosure for
clients and their caretakers.
© 2005 CDHS/Research Foundation of SUNY/BSC
HIV/AIDS Reference Manual Table 3: HIV/AIDS-Related Psychosocial Issues Page 11 of 20
Topic
Explanation
Factors that May Affect Quality of
Life for HIV-Positive Individuals
and their Family
Members/Caregivers
Heckman (2003) devised
and tested a Chronic Illness
Quality of Life Model and
found that HIV-related
discrimination appeared to
have a negative effect on
life satisfaction by
hindering access to social
support, medical care, and
social services. Heckman
also suggests that an
important goal of
intervention efforts to should
be to link HIV-positive
individuals and their
families with sources of
informational, emotional,
and instrumental support to
increase future optimism and
identify adaptive coping
strategies.
Impact on Daily
Functioning
Disclosing HIV-positive
status may sometimes lead to
discriminatory behavior and
loss of social, emotional, and
financial support from family
and/or friends. HIV-related
discrimination may become a
barrier to accessing needed
services.
© 2005 CDHS/Research Foundation of SUNY/BSC
Training/Practice
Recommendations
Training and education of
Medicaid Workers: Need
for workers to be aware of
the importance of assessing
how an individual’s life has
been impacted by disclosing
positive status (in some
cases also disclosing sexual
orientation and/or substance
abuse issues).
If support from the
individual’s social network
has been lost ,and/or if
discrimination is preventing
access to services, this will
increase the need for
workers to link clients to
sources of financial,
medical ,and social support,
and act as advocates on
behalf of clients.
HIV/AIDS Reference Manual Table 3: HIV/AIDS-Related Psychosocial Issues Page 12 of 20
Topic
Explanation
Factors that May Affect Quality of
Life for HIV-Positive Individuals
and their Family
Members/Caregivers
Feelings of stigma may
contribute to the
experience of depression
and increase the emotional
burden of caretakers.
Service professionals need to
focus on decreasing stigma
experienced by family
members and offer guidance
around issues of disclosure
of HIV status (Demi et al,
1997).
Other articles relevant to this topic:
DeMatteo et al (2002)
Selwyn & Forstein (2003)
Carlisle (2000)
Impact on Daily
Functioning
Feelings of stigma may lead
to increased anxiety and
reluctance to request
assistance and access needed
support services.
© 2005 CDHS/Research Foundation of SUNY/BSC
Training/Practice
Recommendations
Training and education of
Medicaid Workers: Need
for workers to be aware of
the importance of being
sensitive to possible feelings
of stigma experienced by
family members/caretakers
and the necessity of helping
them obtain support by
linking them to community
resources.
HIV/AIDS Reference Manual Table 4: HIV/AIDS-Related Economic Issues Page 13 of 20
Economic Issues related to
HIV/AIDS
Medicaid's Early and Periodic
Screening, Diagnostic, and
Treatment (EPSDT) Program
Explanation
Offers Medicaid-eligible
individuals under age 21
access to Medicaid services
that are medically reasonable
and necessary whether or not
they are covered under the
States' Medicaid plan.
Impact on Health-Related
Quality of Life
Access to direct medical
services, HIV prescription
drugs, diagnostic/laboratory
tests, and treatments for
HIV-related
illnesses/infections is critical
to improving health-related
quality of life for HIVinfected individuals.
© 2005 CDHS/Research Foundation of SUNY/BSC
Training/Practice
Recommendations
Training and education of
Medicaid Workers: Need
for workers to be aware of
the importance of early,
aggressive treatment to slow
the progression from an
HIV-positive diagnosis to an
AIDS diagnosis, to
minimize the effect of HIVrelated and AIDS-related
illnesses, and maximize
ability to function and
maintain the highest degree
of independence possible
(through medical treatment,
support services, social
services).
HIV/AIDS Reference Manual Table 4: HIV/AIDS-Related Economic Issues Page 14 of 20
Economic Issues related to
HIV/AIDS
AIDS Drug Assistance Program
(ADAP)
Explanation
The AIDS Drug Assistance
Program (ADAP) is available
to HIV-positive people with
limited income and assets.
Four different programs
offered by ADAP are:
ADAP, ADAP-Plus, HIV
Home Care Program and
the APIC (ADAP Plus
Insurance Continuation)
program. ADAP pays for
many HIV prescription
drugs. ADAP-Plus pays for
doctor visits and labs (like
blood tests). The HIV Home
Care Program pays for nurses
and home attendants who can
assist you if you are
homebound. The APIC
program pays for private
health insurance.
Impact on Health-Related
Quality of Life
Access to direct medical
services, HIV prescription
drugs, diagnostic/laboratory
tests, and treatments for
HIV-related
illnesses/infections is critical
to improving health-related
quality of life for HIVinfected individuals.
© 2005 CDHS/Research Foundation of SUNY/BSC
Training/Practice
Recommendations
Training and education of
Medicaid Workers: Need
for workers to be aware of
the importance of early,
aggressive treatment to slow
the progression from an
HIV-positive diagnosis to an
AIDS diagnosis, to
minimize the effect of HIVrelated and AIDS-related
illnesses, and maximize
ability to function and
maintain the highest degree
of independence possible
(through medical treatment,
support services, social
services).
HIV/AIDS Reference Manual Table 4: HIV/AIDS-Related Economic Issues Page 15 of 20
Economic Issues related to
HIV/AIDS
Medicaid Buy-In/Ticket-to-Work
Program
Explanation
The Medicaid Buy-In
Program allows full
Medicaid coverage to
people with disabilities who
are working and earning
more than the allowable
limits for regular Medicaid.
This state by state option was
enhanced through the Ticket
to Work and Work Incentives
Improvement Act signed by
President Clinton in
December, 1999. In January
2002, Governor Pataki signed
state legislation allowing
New York State to provide
the Medicaid Buy-In. The
Program started in New
York State on July 1, 2003.
Impact on Health-Related
Quality of Life
Access to direct medical
services, HIV prescription
drugs, diagnostic/laboratory
tests, and treatments for
HIV-related illnesses is
critical to improving healthrelated quality of life for
HIV-infected individuals.
© 2005 CDHS/Research Foundation of SUNY/BSC
Training/Practice
Recommendations
Training and education of
Medicaid Workers: Need
for workers to be aware of
the importance of early,
aggressive treatment to slow
the progression from an
HIV-positive diagnosis to an
AIDS diagnosis, to
minimize the effect of HIVrelated and AIDS-related
illnesses, and maximize
ability to function and
maintain the highest degree
of independence possible
(through medical treatment,
support services, social
services).
HIV/AIDS Reference Manual Table 4: HIV/AIDS-Related Economic Issues Page 16 of 20
Economic Issues related to
HIV/AIDS
Medicaid Buy-In Ticket-to-Work
Program in New York State
***Please refer to official Medicaid/
government affiliated websites and
employee handbooks for up to date
information relevant to income
limits/allowances, etc., as the specific
money amounts included in this table
may not represent the most up-to-date
rules and regulations.***
Explanation
New York State residents,
at least age 16 but not yet
65, who have a disability as
defined by the Social
Security Administration
and who are engaged in full
or part time paid work may
be eligible to apply for the
Medicaid Buy-In. An
individual can have a gross
income (before taxes) of up
to $47,580 and the amount
for a couple is $63,492
(figures may change April 1,
2004). These amounts may
be higher if a claim of
impairment-related work
expenses (IRWI's) is made
that are necessary to work,
and if they are approved by
Medicaid. An example would
be if a client is not able to
take public transportation and
has to pay for a van service.
Resources such as bank
accounts, stocks, bonds and
vacation homes are permitted
up to $10,000 in value.
Impact on Health-Related
Quality of Life
Access to direct medical
services, HIV prescription
drugs, diagnostic/laboratory
tests, and treatments for
HIV-related
illnesses/infections is critical
to improving health-related
quality of life for HIVinfected individuals.
© 2005 CDHS/Research Foundation of SUNY/BSC
Training/Practice
Recommendations
Training and education of
Medicaid Workers: Need
for workers to be aware of
the importance of early,
aggressive treatment to slow
the progression from an
HIV-positive diagnosis to an
AIDS diagnosis, to
minimize the effect of HIVrelated and AIDS-related
illnesses, and maximize
ability to function and
maintain the highest degree
of independence possible
(through medical treatment,
support services, social
services).
HIV/AIDS Reference Manual Table 4: HIV/AIDS-Related Economic Issues Page 17 of 20
Economic Issues related to
HIV/AIDS
AIDS Health Insurance Program
(AHIP)
***Please refer to official Medicaid/
government affiliated sites and
employee handbooks for up to date
information relevant to income
limits/allowances, etc., as the specific
money amounts included in this table
may not represent the most up-to-date
rules and regulations.***
Explanation
AHIP is a program
administered by Medicaid
which pays health insurance
premiums only for those who
are not Medicaid eligible and
who have limited income.
Unlike other "means based"
entitlements, AHIP does not
take resources into
consideration when
determining eligibility. They
base your eligibility on the
amount of your monthly
income. If you return to
work, you may be eligible to
have AHIP pay your health
insurance premium if your
monthly income is below
185% of the federal poverty
level. In 2004, an individual
is allowed to have gross
income of up to $1,436. A
family of two is allowed
income of up to $1,926 and a
family of three is allowed up
to $2,416.
Impact on Health-Related
Quality of Life
Access to direct medical
services, HIV prescription
drugs, diagnostic/laboratory
tests, and treatments for
HIV-related
illnesses/infections is critical
to improving health-related
quality of life for HIVinfected individuals.
© 2005 CDHS/Research Foundation of SUNY/BSC
Training/Practice
Recommendations
Training and education of
Medicaid Workers: Need
for workers to be aware of
the importance of early,
aggressive treatment to slow
the progression from an
HIV-positive diagnosis to an
AIDS diagnosis, to
minimize the effect of HIVrelated and AIDS-related
illnesses, and maximize
ability to function and
maintain the highest degree
of independence possible
(through medical treatment,
support services, social
services).
HIV/AIDS Reference Manual Table 4: HIV/AIDS-Related Economic Issues Page 18 of 20
Economic Issues related to
HIV/AIDS
Social Security Disability
(SSD)/Supplemental Security
Income(SSI) for HIV-infected
Individuals
Explanation
Impact on Health-Related
Quality of Life
In order to be considered
Access to direct medical
eligible for SSD or SSI, an
services, HIV prescription
HIV-positive individual must drugs, diagnostic/laboratory
obtain documentation from
tests, and treatments for
physicians or other medical
HIV-related
sources certifying that HIV
illnesses/infections is critical
infection is severe enough to to improving health-related
meet medical eligibility rules. quality of life for HIVInformation must also be
infected individuals.
provided as to how
HIV/AIDS has affected
daily activities, such as
cleaning, shopping, cooking,
taking the bus, etc.
© 2005 CDHS/Research Foundation of SUNY/BSC
Training/Practice
Recommendations
Training and education of
Medicaid Workers: Need
for workers to be aware of
the importance of early,
aggressive treatment to slow
the progression from an
HIV-positive diagnosis to an
AIDS diagnosis, to
minimize the effect of HIVrelated and AIDS-related
illnesses, and maximize
ability to function and
maintain the highest degree
of independence possible
(through medical treatment,
support services, social
services).
HIV/AIDS Reference Manual Table 4: HIV/AIDS-Related Economic Issues Page 19 of 20
Economic Issues related to
HIV/AIDS
Medicaid Surplus Income
Spenddown and ADAP
***Please refer to official Medicaid/
government affiliated sites and
employee handbooks for up to date
information relevant to income
limits/allowances, etc., as the specific
money amounts included in this table
may not represent the most up-to-date
rules and regulations.***
Explanation
Impact on Health-Related
Quality of Life
As of January 2005,
Access to direct medical
individuals are allowed to
services, HIV prescription
have $667 in monthly income drugs, diagnostic/laboratory
to be eligible for regular
tests, and treatments for
Medicaid coverage without a HIV-related
surplus. If more than $667
illnesses/infections is critical
dollars is earned, the amount to improving health-related
over and above becomes the
quality of life for HIVMedicaid surplus the
infected individuals.
individual must pay (i.e. a
deductible) before Medicaid
will cover expenses. The
AIDS Drug Assistance
Program (ADAP),
administered by The New
York State Department of
Health, offers a solution
which could enable you to
meet Medicaid surplus
requirements without
incurring out of pocket
expenses as described above.
(ADAP can be reached at 1800-542-2437 ).
© 2005 CDHS/Research Foundation of SUNY/BSC
Training/Practice
Recommendations
Training and education of
Medicaid Workers: Need
for workers to be aware of
the importance of early,
aggressive treatment to slow
the progression from an
HIV-positive diagnosis to an
AIDS diagnosis, to
minimize the effect of HIVrelated and AIDS-related
illnesses, and maximize
ability to function and
maintain the highest degree
of independence possible
(through medical treatment,
support services, social
services).
HIV/AIDS Reference Manual Table 4: HIV/AIDS-Related Economic Issues Page 20 of 20
Economic Issues related to
HIV/AIDS
Factors that May Influence
Decisions Related to Entering or
Re-entering the Workforce for HIVPositive Individuals
Other articles relevant to this topic:
Braveman (2001)
Kohlenberg & Watts (2003)
Glenn et al (2003)
Escovitz (2004)
Explanation
Impact on Health-Related
Quality of Life
For some HIV-positive
Brooks et al (2004)
conducted a study to identify individuals, treatment may
barriers to employment. The lead to longer symptom-free
major areas of concern
periods which may prompt
reported were fear of loss of
them to consider a return to
medical benefits, concerns
work. Anxiety around issues
about how their health status of coping with treatment side
would affect ability to work, effects, the ability to pay for
fear of discrimination in the
medications/treatments, and
workplace, issues related to
requesting workplace
workplace accommodations, accommodations may
and worries about insufficient become barriers to
job skills and abilities.
entering/re-entering the
workforce.
Hunt et al (2003)
© 2005 CDHS/Research Foundation of SUNY/BSC
Training/Practice
Recommendations
Training and education of
Medicaid Workers: Need
for workers to be aware of
how the physical and
psychological challenges of
living with HIV may affect
major life decisions (such as
the decision to return to
work). Workers must also
familiarize themselves with
programs such as Medicaid
Buy-In/Ticket to Work that
can help clients continue to
receive medical coverage
for treatments after
returning to work.