[acb-hsp] [leadership] Part 2 of the Equal Rights Center report on illprepared health care system.

[peter altschul]

 ---- Original Message ------
From: Charles Crawford <ccrawford at starpower.net
Subject: [leadership] Part 2 of the Equal Rights Center report on 
illprepared health care system.
Date sent: Sun, 06 Nov 2011 11:33:15 -0500

Part 2 of 2.

10


“Being unable to access
medical services is frus-
trating and embarrassing
to people with disabilities
and also concerning for
health reasons.”

-ERC Member, Georges Aguehounde
.  A woman who is blind was required to answer
confidential medical questions which
were read aloud to her by office personnel in a
busy waiting room, rather than provid-
ing her a private space or an electronic version
she could complete by herself.  Failure
to secure confidentiality discourages the candid
communication between patient and
medical provider that is needed for effective treatment.


These situations illustrate a severe and systemic
issue.  The problems facing people with disabilities
when accessing health care are wide-ranging and
very serious.  As noted by one group of accessibility
experts:

Evidence shows that many people with disabilities
often receive substandard healthcare.
Many complex factors contribute to this reality,
including limitations on services by insurers,
discriminatory practices and policies by
healthcare providers, and widespread lack of aware-
ness about disability within the healthcare
industry as a whole
.  Responsibility for identify-
ing and initiating effective strategies that
build on the principles of the ADA and that will
lead to a shift in the current approach to
healthcare delivery for people with disabilities rests
with diverse stakeholders.10

















10 J.  Panko Reis, M.  L.  Breslin, L.  I.  Iezzoni,
and K.  Kirscher, It Takes More Than Ramps to Solve the 
Healthcare Cri-
sis for People with Disabilities (Chicago:
Rehabilitation Institute of Chicago, 2004) at 42.





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Health Care and Legal Protections



The landmark 1990 Americans with Disabilities Act
(ADA), and Section 504 of the Rehabilitation Act of
1973 (Section 504), established wide-ranging
national mandates prohibiting discrimination based on
disability.  Collectively, these two vital laws
prohibit public and private health care providers from dis-
criminating against people with disabilities, and
ensure equal opportunity to participate in and benefit
from health care services.

Under Federal law, a person is defined as having
a disability when he or she: (a) has a physical or men-
tal impairment11 that substantially limits one or
more major life activities; (b) has a record of such an
impairment; or (c) is regarded as having such an
impairment.  Under the 2008 ADA Amendments, ma-
jor life activities include, but are not limited
to: seeing, walking, and learning, as well as the operation
of major bodily functions – like the immune
system.  The Amendments also make clear that the ADA
covers people with episodic conditions, such as
epilepsy.  Today, a person is protected under the ADA if
he or she has a disability that substantially
limits a life activity when the condition is in an active state,
even if the condition is not evident or does not
limit a life activity at all times.12

Section 504 of the Rehabilitation Act

The first Federal civil rights law protecting
individuals with disabilities was the Rehabilitation Act of
1973.  Section 504 of this Act prohibits
discrimination against otherwise qualified people with disabili-
ties under any program or activity that receives
Federal financial assistance.13 It directly applies to
state Medicaid agencies as well as health care
entities and providers that receive Federal monies
through Medicaid, Medicare, or Federal block
grants.  In the medical setting, the Rehabilitation Act is
frequently applied since the vast majority of
health care providers accept Medicaid and Medicare
funds from the Federal government.  14





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12


11 Americans with Disabilities Act, 42 U.S.C.
§12102 (1990), amended by the Americans with Disabilities Amend-
ments Act, Pub.  L.  No.  110-325 (2008).

12 Id.

13 Rehabilitation Act, 29 U.S.C.  §794 (1973).
14 Id.
The Americans with

Disabilities Act

The ADA, enacted in 1990, provides
protections from discrimination for
individuals with disabilities.  Titles II
and III of the ADA also prohibit disa-
bility discrimination and require
health care providers to be physically
and programmatically accessible to
people with disabilities.15 Title II of
the ADA prohibits discrimination by
public entities run or funded by state
and local governments.  These in-
clude any department, agency, spe-
cial purpose district, or other instru-
mentality of a state or local govern-
ment, including community health clinics or state run 
hospitals.16

Title III of the ADA prohibits any public
accommodation from discriminating against individuals with
disabilities by denial of access to goods and
services.  Public accommodations include all areas open to
the public, including restaurants, stores, banks,
pharmacies, legal offices, doctors’ offices and hospi-
tals.  Title III states that “private entities are
considered public accommodations for purposes of this
title, if the operations of such entities affect
commerce” and specifically includes “professional office of
a health care provider, hospital, or other service 
establishment.”17





15 42 U.S.C.  §§12101, et seq.

16 42 U.S.C.  §12115.

17 42 U.S.C.  §12181.


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Under Title III, discrimination includes:

.  Establishment of eligibility criteria that
screen out individuals with disabilities from
equally benefiting from a good or service;
.  Failure to make reasonable modifications in
policies, practices, or procedures when such
modifications are necessary to ensure that
individuals with disabilities have access to
the goods or services;
.  Failure to take such steps as may be necessary
to ensure that no individual with a disa-
bility is excluded, denied services, or treated
differently because of the absence of auxil-
iary aids and services;
.  Failure to remove architectural barriers; and
failure to make a good or service available
through alternative methods if such methods are readily 
achievable.18


The purpose of Title III is to ensure that no
person with a disability is denied goods or services offered
to the public because of their disability.  This
language makes clear that it is unlawful for a privately run
hospital or doctor’s office to make its goods or
services unavailable to people with disabilities as a re-
sult of a failure to take the necessary steps to
ensure equal access.  Under both Titles II and III, medical
facilities must ensure that their goods and
services are accessible to people with disabilities.

One component of accessibility is the elimination
of “structural barriers” that deny access to people
with disabilities.  Structural barriers are
tangible components of buildings that make it difficult or im-
possible for a person with a disability to enter
and maneuver about a space effectively and safely, such
as stairs.19

Another aspect of accessibility is the
willingness to make accommodations for people with disabilities.
Reasonable accommodations are modifications in a
procedure, practice, or policy, which allow individ-





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18 Id.

19 42 U.S.C.  §12182(b)(2)(A).
uals with disabilities to equally benefit from the
goods or services being offered.20

Finally, public entities must provide auxiliary aids
and services to ensure effective communication
between medical staff and patients.21 Auxiliary
aids and services may include hiring an ASL Inter-
preter for a doctor’s appointment, or providing
documents in alternative formats to individuals
who are blind or low vision.

Structural barriers in medical facilities prevent peo-
ple with disabilities from getting proper diagnoses
and treatment.  Under federal law, including acces-
sibility standards such as the ADA Accessibility
Guidelines, medical facilities must be free from
structural barriers and meet certain accessibility
standards.  These standards include but are not limited to:

.  Accessible entrances with no stairs;
.  Doors that are wide enough to ensure safe
passage by individuals using mobility aids;
.  Paths of travel throughout buildings that are accessible;
.  Restrooms that have grab bars and accessible sinks;
.  Items such a water fountains, pay phones, and
service counters low enough to be within
reach for an individual with a mobility disability or short 
stature; and









20 Id.

21 Id.


“It was quite shocking to
me to find out that people
were not getting routine
basic care, and the only
factor was that they were
disabled.  The rights are
only as good as the people
and only good if they are
being enforced.  ”

-ERC Member, Rosemary Ciotti


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.  Braille signage on elevators and restrooms.22


Medical facilities must provide auxiliary aids
and services to ensure effective communication between
medical staff and patient.  Auxiliary aids are
services or devices that enable persons with impaired sen-
sory, manual, or speaking skills to communicate
effectively and have an equal opportunity to partici-
pate in, and enjoy the benefits of, programs or
activities conducted by the entity.23 In the medical
setting, auxiliary aids and services may include
hiring an American Sign Language Interpreter for a doc-
tor’s appointment or providing documents in
alternative formats to individuals who are blind or low
vision.

Medical facilities do not have to make
accommodations or provide auxiliary aids and services when
doing so would be an undue hardship or when an
accommodation would be a fundamental alteration
in the nature of the goods or services
provided.24 Whether or not an accommodation constitutes an
undue hardship depends on a variety of factors,
including the cost of the accommodation relative to
size of the business.25 For example, a large
hospital located next to a deaf university may be required
to ensure that qualified American Sign Language
Interpreters are available or can be made available at
any time.  However, for a small doctor’s office
with two physicians, ensuring immediate access to an
interpreter may be an undue burden.  While the
doctor’s office is still responsible for providing an aux-
iliary aid, another option may be to provide
interpreters when a patient requests the communication
aid in advance.

Likewise, a medical provider is not required to
make an accommodation if doing so would be a funda-
mental alteration in the nature of the goods or
services provided.  For example, the primary care physi-
cian of an individual who uses a wheelchair is
not required to treat a patient for cancer, even if the pa-
tient requests.  To treat the cancer would be a
fundamental alteration in the nature of the services the
primary care physician would normally provide.
The primary care physician is required to make an





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22 Department of Justice.  2010 ADA Standards for
Accessible Design.  28 CFR part 36, (2010).

23 28 C.F.R.  § 36.303 .

24 42 U.S.C.  §12182(b)(2)(A)(ii)(iii).

25 42 U.S.C.  §12181(9).
appropriate referral to an oncologist, as
he or she would for any other patient.

Finally, health care providers located in
buildings that have been completed or
undergone significant alterations since
1993 must be designed and constructed
so that they are fully accessible.  Facilities
operating in buildings build prior to 1993
are required to remove architectural bar-
riers such as steps, narrow doorways, and
inaccessible toilets if doing so is “readily
achievable.” Such alterations are consid-
ered “readily achievable”26 if they can be
carried out without too much difficulty or
expense.27



Health Care Reform

The recently passed health care reform law, The
Patient Protection and Affordable Care Act, has the
promise of making quality health care more
accessible for all Americans, including people with disabili-
ties.28

Of relevance to this report, health care reform
will affect people with disabilities in the following ways:








26 42 U.S.C.  §12182(b)(1)(A).

27 42 U.S.C.  §12181(9)

28 The Patient Protection and Affordable Care
Act, Pub.  L.  No.  111-148, 124 Stat.  119-124 (2010), as 
amended by
the Health Care and Education Reconciliation Act,
Pub.  L.  No.  111-152, 124 Stat.  1029-1084 (2010).


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.  As of 2014, health insurance providers will no
longer be able to discriminate against people
due to disability or any other pre-existing condition;
.  The U.S.  Access Board, in consultation with the
Food and Drug Administration, is required to
establish regulatory standards setting the
minimum technical criteria for accessible medical
diagnostic equipment for people with
disabilities.  While existing law requires medical equip-
ment to be accessible, these standards are
intended to clarify how to comply with this re-
quirement;
.  Medical professionals are required to receive
disability awareness training to help reduce the
health disparities that exist for people with disabilities; and
.  Except as provided elsewhere in the law,
discrimination based on disability is prohibited under
any health program or activity which receives
Federal assistance, including credits, subsidies,
contracts of insurance, or under any program or
activity that is administered by an Executive
Agency.  Section 504 of the Rehabilitation Act
provides enforcement mechanisms for viola-
tions.


Other Legal Protections

In addition to federal protections, many states,
as well as some counties and cities, also have disability
nondiscrimination laws that apply to health care
providers, including individual practitioners, nonprofit
and commercial hospitals, and HMOs.29 In the
District of Columbia, The DC Human Rights Act forbids
DC government entities and all public
accommodations from discriminating against individuals due to
disability.30


29 See, e.g., California’s Unruh Civil Rights Act
as applied in Washington v.  Blampin, 226 CA2d 604, 38 CR 235
(1964).  The Act’s broad language of “services in
all business establishments of every kind whatsoever” was in-
tended to cover the professions.  See Leach v.
Drummond Med.  Group, 144 CA3d 362, 269, 370 (1930), in which
the Act is applied to a corporate medical group
that refused future medical services to plaintiffs with 
disabilities.

30 DC Human Rights Act, D.C.  Code §2-1402.73, §2-1402.31.







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18
The Equal Rights Center’s Testing of the Availability of
Accessible Medical Care

After receiving complaints from ERC members
regarding inaccessible medical facilities and the lack of
appropriate accommodations in doctors’ offices
and pharmacies, the ERC sought to determine the ex-
tent to which these anecdotal stories were
indicative of larger problems across the country.  Respond-
ing to specific complaints, the ERC commenced a
three-pronged investigation to gather information on
the prevalence of discrimination in health care settings.

The ERC’s investigation studied and measured:

.  Structural accessibility in optometrists’ offices;
.  Accommodations in doctors’ offices for
individuals who are blind or have low vision; and
.  Accommodations in pharmacies for individuals
who are blind or have low vision.




Structural Accessibility of Optometrists’ Offices

Structural inaccessibility is a barrier to
countless people with disabilities.  Individual complainants re-
ported difficulty not only entering the offices
and maneuvering around, but also getting a complete
exam due to the lack of equipment needed to
perform eye exams on individuals seated in wheel-
chairs.31

In the first prong of its investigation, the ERC
sought to determine if individuals who use wheelchairs
would encounter barriers while attempting to get
an eye exam.  The ERC measured if facilities them-


31 For example, many phoropters used by
optometrists to test visual acuity are not designed to be lowered 
to
accommodate a person using a wheelchair.  Absent
the ability to transfer into an exam chair, this critical 
diagnos-
tic equipment is not accessible.


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selves were structurally accessible, and if the
medical equipment used by retail optometrist
offices was adaptable for people with disabili-
ties.  The testing methodology for this prong
relied largely on self-reporting.  Testers posed
as potential consumers who were calling in ad-
vance of scheduling an appointment to see if
they would be able to access the facilities.

  ERC testing revealed that optometric medical
facilities routinely lack the equipment to pro-
vide services to people with disabilities.  Of the
fifteen locations tested for wheelchair accessi-
bility, only three had the necessary equipment
to provide an eye exam to an individual in a
wheelchair.  Twelve out of fifteen (80 percent)
lacked the accessibility needed to provide an
individual in a wheelchair an eye exam.  Alt-
hough some of this inaccessibility stemmed
from the structural inaccessibility of the office
itself, the biggest accessibility barrier was the
inability to provide an eye exam to someone
seated in a wheelchair.








“When making medical ap-
pointments, I have many of
the same priorities as any in-
dividual; a convenient loca-
tion where I can get an ap-
pointment.  When unable to
enter an optometrists’ loca-
tion, told I could not access
their equipment, and forced
to discuss my disability in
public it both wasted much
of my time and left me em-
barrassed.”

-ERC Member, Georges Aguehounde





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20
Accessible Medical Forms

The ERC also receives complaints from individuals
who encounter difficulty in accessing their personal
medical information, and filling out forms at
doctors’ offices.  People with visual disabilities and mobili-
ty disabilities experienced humiliation when
going to a doctor for the first time and being unable to fill
out forms regarding medical history and health
insurance in a confidential setting.  People with visual
disabilities also report numerous attempts to
obtain information regarding their health and being una-
ble to do so because of the lack of accessible documents.

Medical facilities must make accommodations for
people with disabilities so long as the accommoda-
tion is not a fundamental alteration in the
nature of the goods and services provided and does not pose
an undue burden on the medical facility.

The second prong of the ERC’s investigation was
designed to determine the availability of alternative
formats for medical information at doctors’
offices and hospitals.  The ERC tested four different types
of medical facilities, doctors’ offices for the
practice of: (a) internal medicine, (b) ophthalmology, (c)
dermatology, and (d) hospitals.  All of the
doctors’ offices surveyed were privately run with a staff of no
less than three physicians.  The ERC conducted 100
tests, testing each of the four types of medical pro-
viders in 24 states and the District of Columbia.32

In this study, the ERC again relied largely on
self-reporting by the medical services provider themselves.
Surveyors called doctors’ offices posing as
potential patients and inquired: (1) if the office provides
information in alternative formats; (2) the
easiest way to fill out patient history forms prior to a visit, 
or
(3) if there was an accommodation in place to
fill out the forms at the doctors’ office.

The results of this study, unfortunately, confirm
that doctors’ offices routinely fail to provide necessary
accommodations to individuals who are blind or
have low vision.  The results included:


32 Tests were conducted in Arizona, California,
Colorado, Connecticut, Florida, Illinois, Indiana, Maryland, 
Massa-
chusetts, Mississippi, Nebraska, Nevada, New
York, North Carolina, Ohio, Oklahoma, Pennsylvania, Tennessee,
Texas, Utah, Virginia, Washington, Wisconsin, Wyoming.





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.  Of the 25 internal medicine offices tested,
only 20 percent offered documents in large print
and only 12 percent offered documents in an accessible electronic 
format.
.  Of the 25 ophthalmology offices tested, only 20
percent offered documents in large print and
20 percent offered documents in an accessible electronic format.
.  Dermatology offices were slightly better in
that 32 percent offered documents in large print
and 40 percent offered accessible electronic documents.


A much larger percentage of offices offered
alternative accommodations to people with visual disabili-
ties.  However, many of these alternatives failed
to provide the individual with a disability the same
quality of service as a sighted individual.  For
example, many doctor’s offices stated that a receptionist
or nurse could assist in filling out forms.  While
at first, this accommodation may seem adequate, nu-
merous reports from ERC members indicated that
office staffs fail to provide assistance in a way that





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22


Fig.  3


Accessible Medical Forms
ensures the patient’s confidentiality.  Another
accommodation offered by doctors’ offices was the will-
ingness to mail forms to the patient prior to
their appointment.  Again, while this may seem acceptable
at first, since it assures that the forms can be
filled out ahead of time, it still requires that the patient
seek the assistance of a sighted individual in order to complete 
the forms.

The testing of hospitals proved to be very
challenging.  Of the 25 tests conducted, the tester was trans-
ferred among hospital staff 68% of the time, and
approximately 30 percent of the time never spoke
with an individual who could answer their
questions.  In the instances where answers were provided,
only 20 percent of hospitals offered large print
materials and only 24 percent offered documents in
an accessible electronic format.



Accessible Prescription Labels

ERC members with visual disabilities frequently
report that prescription labels are inaccessible, cre-
ating problems determining what medications are
theirs, the expiration dates for the drugs, and dos-
age information.  Included in the complaints are
concerns of being unable to identify medication by pill
texture, shape, or size, resulting in erroneous
dosing or unintended combinations of prescriptions.

Under the Section 504 and the ADA, pharmacies are
required to be structurally accessible and provide
accommodations and auxiliary aids to ensure equal
access and effective communication.  Auxiliary aids
are services and devices used to ensure effective
communication by an individual who has a disability.
The failure of pharmacies to provide prescription
labels in alternative formats thus violates federal law.

The third prong of the ERC’s investigation was
designed to study the availability of prescription labels
in alternative formats.  The ERC examined the
practices of four major prescription retailers by con-
ducting 100 tests in 24 states and the District of Columbia.33


33 Tests were conducted in Arizona, California,
Colorado, Connecticut, Florida, Illinois, Indiana, Maryland, 
Massa-
chusetts, Mississippi, Nebraska, Nevada, New
York, North Carolina, Ohio, Oklahoma, Pennsylvania, Tennessee,
Texas, Utah, Virginia, Washington, Wisconsin, Wyoming.





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The ERC’s investigation sought to determine
whether pharmacies had the capability to label bottles
and provide medication information in alternative
formats in order to be accessible to people who are
blind or have low vision.  Testers were instructed
to specifically ask about the availability of Braille, au-
dible bottles,34 as well as any other
accommodations the store may offer.  The ERC’s study demonstrat-
ed that:

.  Only 1 percent of all retailers offered any information in 
Braille.
.  Only 1 percent of retailers could provide audible bottles.
.  Eighty-six percent were unable to accommodate a
customer with audible bottles, even



34 “Audible bottles” are prescription bottles
that have a device affixed to them that provide information 
regarding
the medication audibly to assist individuals with disabilities.





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Accessible Prescription Labels


Fig.  4
if the customer provided the bottles.
.  Fifteen percent of pharmacies did not offer any
accommodations or suggestions for
how someone with a visual disability could get
prescriptions labeled in alternative for-
mats.


The accommodations and recommendations of the
other 85 percent of pharmacies varied greatly.
Many pharmacies recommended that the person call
another pharmacy, or recommended that the
tester get a personal aid, or have a family
member assist with medication.  Other pharmacies took a
more proactive approach and offered to work with
the person and provide different sized bottles and
direct consultation, or assist the person in
distributing their medication into monthly pill planners.

These four major retailers represent nearly
20,000 stores nationwide, a substantial share of the total
pharmacies in the United States.  This is
especially troubling since the ERC testing reveals that there is
no protocol in place to provide accommodations to
individuals who are blind or have low vision.  The
inability of individuals who are blind or have
low vision to access their own medication exemplifies the
challenges people with disabilities face in
trying to obtain effective health care.

















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Conclusion

The availability of accessible medical services,
medical forms, and prescription drugs plays a
uniquely vital role in the lives of people with
disabilities.  The Equal Rights Center’s testing
investigations and the many experiences of ERC
members show that this community is, at best,
given second-class treatment.

Notwithstanding the promises of equal opportu-
nities for people with disabilities mandated by
both the ADA and Section 504, individuals
across the nation are still denied adequate and
necessary health care every day due to their
disabilities.  With more than 54 million Ameri-
cans living with disabilities, a number that is
rapidly expanding, the continued widespread discrimina-
tion against people with disabilities in the area
of health care is unacceptable.

The Equal Rights Center hopes that as a result of
the findings in this study, disability rights advocates,
government enforcement agencies, and community
leaders will continue to promote equal access to
rectify this type of discrimination against
people with disabilities.  Through a coordinated, concerted
effort to respond to these issues, providers of
health care services and products have the opportunity
to transform their current compliance with these
laws from an embarrassment into a model of equal
opportunity for the disability community.






“A medical clinic is one
place where you should ex-
pect accessible care and ser-
vices.  I am thankful that
some locations do offer ac-
cessible services so people
with disabilities have the
same quality of care as non-
disabled individuals.”

-ERC Member, Angela Vaughn





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