A CALL TO ACTION:
A Guide for Managed
Care Plans Serving
Californians With
Disabilities
A report by Disability Rights Advocates
WHAT IS DRA?
Disability Rights Advocates (DRA) is a non-profit law center dedicated to protecting the civil
and human rights of individuals with disabilities throughout the United States and the world.
DRA is run by people with disabilities for people with disabilities. We work to end
discrimination in access to health care, public accommodations, employment, transportation,
insurance, education, housing, and other key areas of life. Our mission is to ensure that
individuals with disabilities will no longer be treated as second-class citizens. DRA serves all
disabilities, physical, mental, and emotional, and focuses on systemic problems rather than
individual issues. We have made it a priority to protect those who are the most under-
represented, such as children with disabilities, individuals with sensory disabilities, and those
who have been victims of vicious stereotypes, such as individuals with learning disabilities.
Headquartered in the San Francisco Bay Area, DRA has also established an affiliate office in
Budapest, Hungary. DRA monitors the implementation of national policy, produces "Watch"
reports, and provides advocacy and litigation when necessary.
DRA has successfully challenged unfair practices by many of the largest and most powerful
companies and institutions in the nation. We have successfully represented wheelchair users of
mass transit, deaf patients at hospitals, and disabled children isolated from their classmates.
DRA has brought class actions and other high impact litigation to end discrimination by major
retailers; hotel, restaurant, and gas station chains; universities, cities, and counties; health
maintenance organizations; and other powerful entities. The results have improved access and
integration for millions of people with disabilities.
DRA is a private non-profit organization supported by tax deductible grants and individual
donations.
/   Disability  \
£ Rights Advocates :
449 15th Street, Suite 303
Oakland, CA 94612
Phone:(510)451-8644
Fax:(510)451-8511
TTY: (510)-451-8716
Email: general@dralegal.org
Website: www.dralegal.org
A CALL TO ACTION:
A Guide For Managed Care
Plans Serving Californians
with Disabilities
Principal Author: Alexius Markwalder
This report was generously underwritten by the California Endowment.
The   California   Endowment
EXECUTIVE SUMMARY
"A Call to Action: A Guide for Managed Care Plans Serving Californians with Disabilities "
describes results from a survey of approximately 400 Californians with disabilities. The survey
aims to provide a snapshot of Californians' experiences regarding a wide range of access needs
in health care. This Report also describes promising health care practices and makes
recommendations for managed care plans to improve the care provided to people with
disabilities.
The delivery of health care service is in crisis for Californians with disabilities. One out of every
five Californians has a long-lasting condition or disability. Based on the findings in this report,
the majority are receiving second-class health care from managed care organizations. Although
people with disabilities pay four times more for medical services than their peers without
disabilities, they receive significantly inferior care. For example, our survey results show the
following:
>    17% of all people with mobility disabilities reported difficulty getting in the main
entrance of their doctor's office.
>   29% of all people with mobility disabilities reported difficulty accessing waiting rooms.
>   33% of all people with mobility disabilities experienced barriers accessing examination
rooms.
>   43% of wheelchair users reported difficulty using exam chairs.
>   69% of wheelchair users reported difficulty using exam tables.
>   60% of wheelchair users reported difficulty being weighed due to inaccessible scales.
>   45% of wheelchair users reported difficulty using x-ray equipment, such as
mammography equipment.
>   26% of individuals who are deaf reported difficulty in getting interpreters for medical
appointments.
>   98% of individuals who are blind or partially sighted reported NOT receiving provider
lists in alternative formats (Braille, CD, large print).
>   90% of individuals who are blind or partially sighted reported NOT receiving educational
materials in alternative formats.
>   95% of individuals who are blind or partially sighted reported NOT receiving medical
history forms in alternative formats.
EXECUTIVE SUMMARY
>   59% of individuals with learning disabilities and 64% of individuals with cognitive
disabilities reported that their providers communicate with someone else in the room
rather than directly communicating with the patient.
>    79% of individuals with cognitive disabilities report receiving too little time to
communicate their symptoms to the provider and ask questions of the provider that are
necessary to ensure effective communication.
These failings should be of concern to all Californians. However, such health care inadequacies
have a devastating impact on the health and life of an individual with a disability. For instance,
John Metzler, a named plaintiff in a lawsuit against Kaiser Permanente and a wheelchair user,
developed pressure ulcers that went unexamined over the course of year because, despite the fact
that he had several doctor's office visits during this time, his doctor did not have an accessible
exam table and the staff refused to lift him onto the inaccessible exam table. As a result, his
pressure ulcers went untreated for over a year. These health care failings can cause numerous
other serious consequences, including misdiagnoses; prescription of inadequate or even harmful
treatment; and great frustration on the patient's part with the health care system.
In addition to harm to patients, managed health care plans that provide such low levels of care
are subject to potentially harmful effects. For instance, a physician who prescribes medications
without knowing the patient's actual weight flirts with malpractice and a managed care plan that
fails to comply with federal and state access laws is open to costly lawsuits.
Health care providers already recognize these risks for other populations (such as African
Americans and the gay and lesbian community) that have special health care needs and providers
have targeted their care accordingly. It is equally critical that managed care plans recognize the
risks they are taking in providing insufficient health care to people with disabilities. This report
is a call to action for all health care providers; it recommends reforms managed care
organizations can institute to ensure the care provided to patients with disabilities is equal to the
care provided to patients without disabilities.
Although removal of architectural barriers can sometimes be costly, many of the reforms, such as
changes to policies and improved communication access, can dramatically improve the health
and lives of people with disabilities at nominal expense. And even the more costly expenses are
counter-balanced by enhanced life and health of people who currently have disabilities; greater
capability of providing care to the aging population; and reduced injuries to health care workers
who try to provide care in an inaccessible environment. This report details reforms that managed
care plans and providers have implemented, thereby improving the care provided to people with
disabilities. Given these successes, managed care plans that want to provide better care should
consider how to institute such reforms in their own systems.
u
TABLE OF CONTENTS
INTRODUCTION
I.         MANAGED CARE AND THE LAW
Federal Access Laws
California Access Laws
Federal and California Insurance Laws
II.        DEMOGRAPHICS AND CULTURE
III.      SURVEY METHODOLOGY
IV.      SURVEY DEMOGRAPHICS
V.        SURVEY RESULTS & RECOMMENDATIONS
Structural Barriers
Effective Communication:
¦         Deaf and Hard-of-Hearing
¦         Blind and Partially Sighted
¦         Cognitive Disabilities
Reasonable Accommodations
Care Coordination
VI.      IMPLEMENTATION
Creation of a Collaborative Task Force
Development of an Action Plan
Conducting Quality Improvement
Conclusion
VII.     MISCELLANEOUS
Attachment A
Contributing Agencies
Reference List
m
INTRODUCTION
Recent developments in California health care advocacy shine a spotlight on the legal
responsibilities of managed care plans, including Health Maintenance Organizations ("HMO")
and Preferred Provider Organizations ("PPO"). In 2000, the establishment of the Department of
Managed Health Care ("DMHC") drew attention to plans' effectiveness at responding to
complaints and grievances and encouraged consumers to expect more from their plans. In 2002,
the DMHC and the Office of the Patient Advocate jointly produced the first annual "HMO
Report Card;" a precedent-setting look at patient satisfaction with HMOs. While the DMHC
primarily regulates commercial plans, other efforts have focused attention on member
satisfaction in HMOs that administer public benefits. For example, from 2000 to 2004, the
California HealthCare Foundation, in collaboration with the Consumer's Union, produced an
online Medicare guide. This guide rated Medicare HMOs in California based on the total
benefits for the money, the quality of the plans' preventive care, the ease of getting referrals to
specialists, and members' overall satisfaction.
More recently and perhaps most critically, the Governor has proposed a redesign of Medi-Cal
that would geographically expand Medi-Cal managed care plans into 13 counties currently
without such plan, and would make enrollment in these plans mandatory for approximately
262,000 children and parents. In an additional 27 counties, the proposal would require 554,000
seniors and individuals with disabilities currently in "fee-for-service" Medi-Cal to enroll in
managed care.1 While some of these plans would be government run, the large majority would
be commercial plans that contract with the government to provide Medi-Cal services. The
proposed redesign provides a financial opportunity to plans, which some believe would improve
Medi-Cal for beneficiaries if implemented effectively. But the redesign also raises serious
concerns that these plans are not prepared, or possibly even designed to serve the needs of such a
large group of people with diverse and significant health care needs. Some advocates argue that
plans have not yet proven their ability to provide accessible services to current managed care
beneficiaries.
In light of each of these developments, plans' responsibilities to their members with disabilities
have come under greater scrutiny.   Health and disability advocates have increased their focus on
disability rights in the health care setting and the ways in which health care law and disability
law intersect. The results of this attention include innovative advocacy programs, important
legal cases, and increased media attention to inequities in health care. The care consumers with
disabilities receive has begun to be viewed not only in terms of universal problems with quality
of care, but also in terms of the access barriers that deny consumers with disabilities the same
level of care as everyone else. As one advocate put it, "My clients are repeatedly told that people
with disabilities have problems getting care because care is bad all over. But where there are
access barriers, people with disabilities can't even access the same problematic care as everyone
else." In response to these developments, California plans are paying increased attention to the
accessibility of their services.
This paper is designed to assist plans that want to improve care to their enrollees with disabilities
and ensure compliance with state and federal access law. Chapter I discusses the legal
responsibilities of managed care plans to ensure accessible services. Chapter II outlines the
demographics and culture of disability to help plans evaluate the size and diversity of the
population. Chapter III describes the survey methodology. Chapter IV introduces the reader to
INTRODUCTION
the survey, undertaken to inform this report. Chapter V describes the survey results, provides
examples of current promising practices, and suggests recommendations for improving access in
each area. Chapter VI discusses the importance of developing a task force, initiating data
collection, and creating disability-focused quality improvement chapters.
For every population, plans must make decisions regarding how they can provide financially
feasible care. The recommendations in this report may be expensive in the short-run; however,
the investments plans make now in their patients' lives will improve health outcomes, and
should, if implemented with a reasonable timeline and the goal of sustainability, produce greater
fiscal outcomes as well.
I.    MANAGED CARE AND THE LAW: FEDERAL
ACCESS LAWS

This section focuses on federal and state laws that require full and equal access to health services
for individuals with disabilities. These laws not only govern access to providers, such as primary
care physicians and specialists, but also plan services, such as information about benefits, filing
of grievances, and any other services the plan offers to potential and actual beneficiaries. This
section primarily focuses on the set of laws commonly referred to as "disability access laws."
However, the end of this section highlights aspects of health care and insurance law particularly
important to this population.
Every managed care plan shares with its contracted agencies the responsibility for ensuring that
the agencies provide accessible services to the greatest extent possible. The law calls this
responsibility "vicarious liability." Different models of managed care plans have different levels
of vicarious liability based on the interaction with and degree of control over the health care
providers, medical groups, hospitals, and other agencies with whom they contract (see
"Attachment A" for a description of the different models of managed care plans). Accordingly,
the extent to which a plan can affect its providers' behavior may impact a court's determination
regarding the extent of the plan's responsibility to ensure the provider's accessibility.
While plans may be vicariously liable for their providers, not all providers can provide fully
accessible health care. Despite this fact, plans should not discontinue contractual relationships
with such providers because many of these providers are critical to beneficiaries' ability to
receive timely care and second opinions and to have a choice of providers that understand their
health condition. This is particularly true for rural areas where the availability of providers is
more limited than in urban areas. As discussed in later chapters, plans should develop a formula
to work with providers to help them achieve the fullest possible degree of accessibility.
The most prominent pieces of federal legislation governing equal access to health care services
for individuals with disabilities are the Rehabilitation Act and the Americans with Disabilities
Act, which together constitute a national mandate prohibiting discrimination on the basis of
disability in the provision of goods and services available to the general public.   California law
reiterates and in some cases expands on federal protections; therefore to understand access
requirements in California, be sure to read this section as well as the section regarding state law
described in the next section.
Section 504 of the Rehabilitation Act ("Rehab Act"), commonly referred to as the "program
access obligation," prohibits any organization that receives federal financial assistance from
denying individuals with disabilities equal access to the services it offers. For example,
hospitals, clinics, and other health care agencies that accept Medi-Cal, Medicare, or any other
form of federal funding must comply with the Rehab Act. Its mandate consists of a single
sentence: "No otherwise qualified individual with a disability . . . shall, solely by reason of her
or his disability, be excluded from the participation in, be denied the benefits of, or be subjected
to discrimination under any program or activity receiving federal financial assistance. . . ."2
The Rehab Act brought about substantial strides in access but it did not apply to organizations
that received no federal funds and it contained few provisions for enforcing the law. Eventually,
Congress recognized that it was "inadequate to combat the pervasive problems of discrimination
I.    MANAGED CARE AND THE LAW: FEDERAL
ACCESS LAWS

that people with disabilities are facing."3 With regard to health care, individuals with disabilities
still encountered inaccessible health care facilities, lack of access to sign language interpreters,
lack of access to written materials, and the malpractice-fueled fear and reluctance of some
doctors to treat individuals with disabilities. To prevent these and other barriers Congress
enacted the Americans with Disabilities Act ("ADA") in 1990.
The ADA is divided into five titles, three of which are particularly relevant to health care
services. Title I governs access to employment, including discrimination in the workplace and in
seeking and maintaining employment. Because employees with disabilities may have similar
access needs to their patients with disabilities, providers should be cognizant of the ways in
which providing access to their employees may increase their ability to provide access to
patients. The provisions of the ADA governing plans' responsibilities to beneficiaries are Title
II and Title III.
Title II extends the Rehab Act's requirement that federally funded entities provide equal access
so that all state and local government activities are required to afford equal access. Title II's
mandate states: "No qualified individual with a disability shall, by reason of such disability, be
excluded from participation in or be denied the benefits of the services, programs, or activities of
a public entity, or be subjected to discrimination by any such entity."
Title III requires that all new places of "public accommodation" and commercial facilities be
usable by persons with disabilities. A "place of public accommodation" is a facility whose
operations affect commerce and fall within one of twelve categories, including service
establishments, such as health care providers. The mandate in Title III states: "No individual
shall be discriminated against on the basis of disability in the full and equal enjoyment of the
goods, services, facilities, privileges advantages, or accommodations of any place of public
accommodation by any person who owns, leases (or leases to), or operates a place of public
accommodation."
Who Do These Laws Protect?
An individual must have a disability to allege a violation of the ADA or Rehab Act. Both of
these laws define an individual with a disability as a person who: has a physical or mental
impairment that substantially limits one or more major life activities; has a record of such an
impairment; or is being regarded by others as having such an impairment.4
Based on these three factors, courts have applied a two-part test. First, the individual must have
a physical or mental impairment, a record of such an impairment, or must be regarded as having
such an impairment.5 The ADA Title III Technical Assistance Manual specifically delineates as
physical or mental impairments visual, speech, and hearing impairments; cerebral palsy;
epilepsy; muscular dystrophy; multiple sclerosis; cancer; heart disease; diabetes; contagious and
non-contagious diseases, such as tuberculosis and HIV (whether symptomatic or asymptomatic);
mental retardation; emotional and mental illness; and specific learning disabilities.6 Second, the
impairment must substantially limit one or more major life activities. Major life activities are
those activities that are of central importance to daily life and include caring for one's self,
I.    MANAGED CARE AND THE LAW: FEDERAL
ACCESS LAWS

performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working.7
Because the lists of disabilities and major life activities are not exhaustive, federal and state
courts continue to define disability through their case law. If a disabling condition is currently
stabilized by mitigating measures, such as medications or prosthetic devices, an individual is not
considered to have a disability under federal law.8
To charge an entity with discrimination, an individual with a disability must be qualified to
receive services from that entity. Individuals are "qualified" if they "meet the essential
eligibility requirements for the receipt of such services."9 For example, a pregnant woman
would generally qualify for obstetric care. However, where a provider refuses to serve a patient
because of their disability, the patient is qualified for services if "there is no factor apart from the
mere existence of disability that renders that participant unqualified for the [services]."10 For
instance, a pregnant woman who is deaf is "otherwise qualified" for obstetric care because she is
pregnant, despite the fact that she is deaf.11 However, a woman who is not pregnant is not
qualified to receive obstetric care, and therefore would not satisfy the qualified requirement
necessary to maintain a claim of discrimination based on refusal of service.
Who Must Comply With These Laws?
All health care providers who offer health care services, either directly or through contractual
arrangements, to Medicare or Medi-Cal beneficiaries must comply with the Rehab Act because
Medicare and Medi-Cal funding is considered federal financial assistance.12 If the provider
serves just one Medicare or Medi-Cal beneficiary, that provider's entire operations must comply
with the Rehab Act.13 Accordingly, Medicare and Medi-Cal managed care plans must provide
programmatic access to all its enrollees with disabilities.
Additionally, all health care providers, including hospitals, nursing homes, psychiatric and
psychological services, private physicians' offices, diagnostic centers, physical therapy centers,
and health clinics, are places of public accommodations and therefore must comply with Title III
of the ADA. As noted above, managed care plans are vicariously liable for their member
providers' discriminatory actions because of the contractual relationship between the parties.14
What Do These Laws Require?
The ADA establishes seven mandates with which plans and providers must comply:
(1) anti-discrimination;
(2) integration;
(3) reasonable accommodation;
(4) effective communication;
(5) accessibility;
I.    MANAGED CARE AND THE LAW: FEDERAL
ACCESS LAWS

(6) association; and
(7) administration.
The anti-discrimination mandate prohibits outright intentional exclusion, arising from prejudice,
as well as unintentional discrimination arising from neglect or indifference.15 Accordingly,
health care providers cannot deny a person with a disability the right to participate in the
providers' services or provide unequal services to individuals with disabilities.
The integration mandate requires that goods, services, privileges, and accommodations be
provided in the most integrated setting appropriate to the needs of the individual with a
disability.16 Therefore, health care providers cannot segregate individuals with disabilities from
the general population of clients or customers unless it is absolutely necessary to provide
services to the person with a disability. For example, if a provider in a medical group cannot
afford an accessible wheelchair scale but a nearby provider has one, the provider may ask the
person with a mobility disability to go to the nearby facility for weighing. Additionally, even if a
health care provider offers separate or different programs or activities, such as educational
programs pain management for individuals who use wheelchairs, an individual with a disability
must be permitted to participate in programs or activities that are not separate or different, such
as educational programs about pain management generally.17
The reasonable accommodation mandate requires health care providers to "make reasonable
modifications to policies, practices or procedures" when necessary to afford individuals with
disabilities goods, services, facilities, privileges and advantages offered to the public. For
example, a health care provider with a "no pets allowed" policy must modify the policy by
making an exception for service animals used by persons with disabilities. The health care
provider should tailor the reasonable modification to the individual's needs. For example, if a
person with a cognitive disability requires more time to communicate with a provider, the length
of appointment time should be extended to ensure the individual understands the provider.
The effective communication mandate requires health care providers to communicate effectively
with individuals who are deaf, hard-of-hearing, or have a speech, vision or learning disability, by
whatever means are appropriate. Providers must supply appropriate auxiliary aids or services to
effectuate such communication, including sign language interpreters, assistive listening devices,
Teletypewriters (TTYs), text, audio formats, Braille or large print, captioned television and
videos, electronic materials, readers, and other accommodations appropriate to achieve effective
communication.
The accessibility mandate requires removal of architectural barriers, where readily achievable,
from buildings, facilities, and communication. Examples of architectural barriers include curbs
and steps, heavy doors, and restrooms too narrow for use by a wheelchair user. The regulations
for implementing the ADA include a broad set of building design specifications to address
architectural barriers in new construction, additions, and remodeling. These guidelines are
known as the "Americans with Disabilities Act Standards for Accessible Design" and are
I.    MANAGED CARE AND THE LAW: FEDERAL
ACCESS LAWS

commonly referred to as "ADAAG." Compliance with these regulations is mandatory. ADAAG
can be found at http://www.access-board.gov/.
The association mandate prohibits health care providers from discriminating against an
individual or entity on the basis of a relationship or association with a disabled individual.18 The
interpretive analysis accompanying this provision states that the term "entity" was included to
ensure that organizations "such as health care providers . . . and others who provide professional
services to persons with disabilities are not subjected to discrimination because of their
professional association with persons with disabilities."19 Therefore, plans cannot institute
credentialing and de-selection practices intended to expel physicians that treat high cost
patients.20
The administration mandate prohibits health care providers from using contractual or other
arrangements that have the effect of discriminating against individuals with disabilities.21 Under
this mandate, a managed care plan cannot rely on eligibility criteria that screen out individuals
with disabilities.     In addition, financial incentives that discourage providers from adequately
treating individuals with disabilities may violate this provision.
What Are The Limits of These Laws?
Health care providers are not required to provide a reasonable accommodation or an auxiliary aid
or service when doing so would "fundamentally alter" the nature of the goods, services, or
operations the provider offers to the public.23 A proposed modification fundamentally alters a
program or service if it endangers a program's viability, causes massive financial expenditures,
jeopardizes the effectiveness of the program or involves a major restructuring of it, or results in
the creation of a new program.24
Health care providers are not required to provide an auxiliary aid or service if it would result in
an "undue burden," which means a significant difficulty or expense.25 To determine whether an
aid or service would be an undue burden, courts consider the provider's overall financial
resources, the cost of the aid or service, and the feasibility of providing the aid or service.26 If
the requested auxiliary aid or service is an undue burden, the provider must offer an alternative
auxiliary aid or service that will ensure effective communication.27
Health care providers are not required to modify architectural barriers if they are not readily
achievable. Readily achievable means removal is "easily accomplishable and able to be carried
out without much difficulty or expense."28 To determine whether a modification is readily
achievable, courts consider the nature and cost of the action, the provider's overall financial
resources, and the provider's operation.29 The readily achievable exception is discussed in more
detail in Chapter V.
Who Enforces These Laws?
The Attorney General and individuals with disabilities can bring a civil action for enforcement of
federal law. The United States Department of Justice ("DOJ") and the United States Department
I.    MANAGED CARE AND THE LAW: FEDERAL
ACCESS LAWS

of Health and Human Services ("DHHS"), among various other entities, enforce the ADA and
the Rehab Act under the authority of the Attorney General. These agencies conduct compliance
reviews and investigations to determine whether a civil action is appropriate. The most
important goal of such civil actions is to obtain injunctive relief to remedy discriminatory
polices. Injunctive relief may include a court order to alter facilities to make them readily
accessible to and usable by individuals with disabilities, provide auxiliary aids and services, and
modify policies or procedures. The court may also award monetary damages to the aggrieved
party or assess civil penalties on the health care provider.30 Since 1994, DOJ has filed 131 health
care civil actions, some of which are described below. For more detailed information about
these cases visit http://www.usdoj.gov/crt/ada/enforce.htm#anchor201570.
Effective communication cases typically involved health care providers' failure to provide
auxiliary aids and services, such as sign language interpreters, TTYs, or other communication
devices that are required to ensure effective communication for individuals who are deaf or hard-
of-hearing. In these cases health care providers agreed to various reforms, including training
physicians on how to interact with deaf or hard-of-hearing patients, creating communication
assessment forms to determine patient communication needs, purchasing and installing TTYs,
and providing auxiliary aids and services, such as assistive listening devices.
Mobility access cases involved architectural barriers to medical offices and facilities. Barriers
included inaccessible parking, main entrances, restrooms, laboratories, and exam roo<abbr title="Ms"><a href="/site_help/glossary.php#ms" title="Ms" class="glossary">Ms.</a></abbr> In
various settlements with the DOJ, California health care providers have agreed to install
accessible parking spaces, remodel restrooms, and modify office entrances to ensure
architectural accessibility for individuals with disabilities.
HIV-status cases most commonly involved health care providers' refusal to provide medical
treatment, such as dental care or surgery. In multiple settlements with the DOJ, various health
care providers agreed to adopt non-discrimination policies, attend training regarding medical
treatment of patients with HIV, provide services to the individual with HIV, and compensate that
individual for damages.
Blind and low vision cases involved health care providers' failure to offer alternative formats.
For instance, in one case, office staff allegedly refused to provide assistance to a blind couple to
complete consent forms while informing the patient that treatment would be denied unless the
forms were completed. The settlement required the health care provider to offer assistance to
blind patients to complete forms, train office staff, and pay compensatory damages.
Accessible medical equipment cases typically involved inaccessible examination tables. In these
settlements with the DOJ, medical centers across the country agreed to provide height-adjustable
examination tables, training to their staff members regarding how to operate the equipment, and
advocates designated to help patients with mobility disabilities receive services as quickly and
efficiently as possible.
Finally, an intellectual disability case was filed against an ophthalmology facility for refusing to
treat a patient with Down Syndrome. The settlement agreement required the facility to adopt a
I.    MANAGED CARE AND THE LAW: FEDERAL
ACCESS LAWS

written non-discrimination policy, post the policy in the lobbies of its offices, distribute the
policy to all employees, and provide mandatory training to all employees.
In addition to enforcement responsibilities, the DOJ and DHHS offer technical assistance to help
providers understand federal regulations. Such assistance includes audio-visual materials,
pamphlets, manuals, electronic bulletin boards, checklists, and training. For more information
visit the DOJ website at http://www.usdoj.gov/crt/ada/taprog.htm.
Private parties may also file civil actions if they believe a health care provider or insurer
discriminated against them on the basis of disability. Injunctive relief is the primary remedy in
such cases. Civil actions have ranged in subject matter and include auxiliary aids and services,
architectural barriers, and denial of medical treatment.
One of the most well-known cases filed by private plaintiffs was Metzler v. Kaiser. In this
landmark civil action filed in 2000, wheelchair users claimed Kaiser Permanente of Northern and
Southern California failed to provide equal and adequate care for patients with physical
disabilities, citing pervasive barriers, such as inaccessible exam rooms, counters, and restrooms,
as well as inaccessible medical equipment, such as examination tables, x-ray machines, and
scales.
John Metzler, a named plaintiff, developed a pressure ulcer that went unexamined over the
course of several office visits because his doctor did not have an accessible exam table to
perform an examination. Therefore, his pressure ulcers went untreated for over a year.   Johnnie
Lacy, also a Kaiser patient, was told to weigh herself on a set of truck scales because clinic
operators did not have a usable scale.
As soon as the lawsuit was filed, the parties entered into settlement negotiations pursuant to
which Kaiser agreed to review its facilities and policies in an effort to institute safe, patient-
centered medical reform. Kaiser further evidenced its commitment to removing access barriers
for individuals with disabilities by agreeing to address the needs of individuals with all types of
disabilities through the settlement, rather than limiting it to individuals with physical disabilities
as the case was initially pled. Under the settlement agreement, Kaiser agreed to hire consultants
to oversee implementation of access surveys, removal of architectural barriers, installation of
accessible critical diagnostic equipment, and revision of policies and procedures. In addition,
Kaiser staff members, including doctors and nurses, were required to attend disability awareness
trainings to help them better assist individuals with disabilities. The reform plan also established
a complaint system for plan enrollees who experience access barriers and/or lack of sensitivity
by providers. Kaiser agreed to designate the Riverside and San Francisco facilities as "living
laboratories" to implement the changes. Kaiser has completed many of the reforms at these two
facilities and therefore is in the process of rolling out the changes at all of the company's clinics
and facilities in California. While Kaiser is unique among California HMOs in the extent of
control it has over its facilities and providers, many of the steps Kaiser took can act as a blueprint
for managed care plans to simultaneously comply with federal and state disability laws and
provide better care to their members with disabilities.
I. MANAGED CARE AND THE LAW:
CALIFORNIA ACCESS LAWS
California law should be examined together with federal law to understand the complete picture
of health care providers' legal obligations. California laws provide greater legal protection than
federal disability law with respect to who is considered to have a disability. However, case law
relating to provision of health care is less developed under state law than federal law. Below is a
description of the coverage and requirements of health care access laws.
Several state laws protect individuals with disabilities from discrimination in obtaining health
care, including the Unruh Civil Rights Act and the Disabled Persons Act. Both of these laws
encompass the requirements of the ADA within their broader and stronger protections.31
The Unruh Civil Rights Act, also known as California Civil Code Section 51, protects persons
with disabilities from discrimination in any business establishment, including all medical
facilities, open to the public. Specifically, the statute provides that "[a]ll persons within the
jurisdiction of this state are free and equal, and no matter what their . . . disability or medical
condition are entitled to the full and equal accommodations, advantages, facilities, privileges, or
services in all business establishments of every kind whatsoever."32
The Disabled Persons Act, also known as California Civil Code Section 54, provides individuals
with disabilities the same right as the general public to the use of public places, public buildings,
and medical facilities, including hospitals, clinics, and physicians' offices. It further mandates
"full and equal access," thereby encompassing the ADA's physical access requirements.33
Who Do These Laws Protect?
These access laws, like federal law, protect individuals who have a physical or mental disability
that limits a major life activity; a record or history of such an impairment; or are regarded or
treated by others as having such an impairment.34   However, California civil rights law spreads
its net of protection over a greater number of individuals with disabilities than federal law
because California law:
(1)        does not take into account mitigating measures, such as medications, assistive
devices, or prosthetics;35
(2)        requires only a limitation upon major life activity, whereas federal law requires
substantial limitation;36
(3)       protects individuals with cancer, regardless of whether they are in remission or
have any "substantial limitation;"37 and
(4)       protects individuals with genetic characteristics associated with a statistically
increased risk of development of a disability.
38
10
I. MANAGED CARE AND THE LAW:
CALIFORNIA ACCESS LAWS
Who Must Comply With These Laws?
All health care providers, including medical groups, doctors, clinics and hospitals, must comply
with California access laws. This includes state and local government health care services
provided either directly or through contractual arrangements.39 Thus, as under the ADA, an
entire health care provider's services must comply with California law if they provide health care
to one or more Medi-Cal recipients.
What Do These Laws Require?
California access law contains similar requirements to those of federal law. For instance, when
the Unruh Civil Rights Act and the Disabled Persons Act are read together, they prohibit
intentional and unintentional discrimination, as does the ADA.40 The integration and reasonable
accommodation provisions found in federal law are represented in California civil rights law
through the "full and equal" language. Finally, new construction, alterations, structural repairs
and additions are subject to access provisions established in the California Building Code and
local building codes. The California Building Code expands on and in some ways differs from
ADAAG, so it is important that businesses working in California be familiar with its
requirements (see Section on "Structural Barriers" for more information).
Who Enforces These Laws?
Like federal law, the state and private individuals may bring actions to enforce these laws.
Individuals may file their own lawsuit; however, it may be necessary to go through an
administrative complaint process first. Various California agencies ensure compliance with state
laws. For instance, the building department of every city and county is the primary enforcer. In
addition, the Department of Rehabilitation, the Attorney General, District and City Attorneys,
and the Department of Consumer Affairs are authorized under the law to investigate complaints
filed by individuals who believe they have been the subject of discrimination. If the agency
finds a violation occurred, it can impose various sanctions and award various remedies, similar to
federal law, to the victim of the discrimination. Before the Attorney General will consider such
complaints, the individual must first file a complaint with the appropriate local building official.
11
I. MANAGED CARE AND THE LAW:
FEDERAL AND CALIFORNIA INSURANCE LAWS

The disability access laws described above protect only individuals with disabilities who
confront architectural or programmatic barriers in accessing health care. There are many other
important health care laws that govern access to health care services and insurance coverage but
that do not necessarily protect only individuals with disabilities. However, these laws, which are
described below, are particularly relevant because they govern services people with disabilities
commonly use, including: mental health parity; timely access to providers and specialists; access
to referrals; and access to insurance.
Laws Governing Access to Benefits
The Federal Mental Health Parity Act of 1996 and California mental health parity laws have
taken a significant step toward ensuring greater coverage of mental health care services. The
Mental Health Parity Act requires that group plans, with 50 workers or more, offering mental
health coverage include no annual or lifetime dollar limits on mental health benefits that are less
favorable than those offered for other medical or surgical benefits.
California law requires that commercial health plan enrollees receive treatment (including
outpatient services, inpatient hospital services, partial hospital services, and prescription
medications if the plan covers them) for certain covered mental health conditions on the same
terms as other medical conditions. Plans also cannot impose higher co-payments or deductibles
for mental health care for covered conditions or impose different maximum out-of-pocket
expenses. Covered conditions include schizophrenia, schizoaffective disorder, bipolar disorder
(manic-depressive illness), major depressive disorders, panic disorders, obsessive-compulsive
disorder, pervasive developmental disorder or autism, anorexia nervosa, and bulimia nervosa.
While these laws do not ensure full parity, they significantly impact provision of care to people
with mental health disabilities and represent an important milestone for coverage parity for
people with all disabilities. California's mental health parity law does not apply to Medi-Cal
HMOs. Plans administering public benefits programs must follow Medicaid's program
requirements regarding benefits coverage.
Access to Providers and Specialists
California law also ensures timely access to primary care physicians, specialists, and second
opinions. Under the California Health and Safety Code, individuals have the right to choose a
primary care physician and receive health care services in a timely manner.41 Patients also have
the right to receive an authorization from a health plan for referral to a specialist within three
days and to get a second opinion when necessary. 42 For a comprehensive discussion of provider
access rights, visit www.calpatientsguide.org.
Like commercial plans, Medi-Cal managed care plans must offer health care services in a timely
manner. For example, enrollees should receive a routine physical exam within a month of
requesting one. Initial pregnancy visits should be available within one week of a request and
well child visits should be available within two weeks. If an enrollee requests a routine referral
to a specialist, the enrollee should have an appointment within two weeks or as directed by the
primary care physician. If the request is urgent, the enrollee should have an appointment within
12
I. MANAGED CARE AND THE LAW:
FEDERAL AND CALIFORNIA INSURANCE LAWS

72 hours.43 In addition to timely care, Medi-Cal managed care plans must also offer an adequate
network of providers, comprehensive case management, and care coordination services
appropriate to the needs of each member.44 These and other requirements set a very high
standard of care for managed care plans that want to serve Medi-Cal beneficiaries.
Access to Insurance
Various federal and state laws prohibit group plans from excluding an individual from or
charging an individual more, based on disability, for health care coverage. However, group
plans may restrict coverage for a pre-existing condition for a limited period of time.45 California
laws also prohibit many insurers from arbitrarily rejecting an individual application or charging
more on the basis of disability without actuarial data showing that the condition justifies the
denial or increased premium.46 There are many additional protections depending on an
individuals' financial situation or coverage options. For an extensive discussion of some of these
laws, visit www.disabilitybenefits 101 .org or the Department of Managed Health Care website at
www.dmhc.ca.gov.
Summary
Enforcement of federal and state laws has spurred important reforms to health care services at
both the provider and the plan level. As a result of numerous public and private civil actions,
individual providers have modified policies and practices to increase the accessibility of their
health care services. Many doctor's offices have adopted anti-discrimination policies; installed
accessible parking spaces, ramps, and restrooms; offered auxiliary aids and services; and
performed necessary medical procedures.
Reform at the managed care plan level has been more limited but has the potential to have
greater impact on health care services for individuals with disabilities. For instance, because
Kaiser Permanente serves a high percentage of the California population, the impact of their
recent and planned modifications has been and will continue to be expansive. However, there
are many plans that have yet to initiate any reform toward improving the accessibility of their
services. As a result, many Californians with disabilities continue to confront barriers to
obtaining full and equal access to health care. As previously noted, much of this paper offers
detailed methods for providing full and equal access to health care as required under federal and
state law. To implement these recommendations, plans must first recognize and appreciate the
diverse conditions and health care needs of the disability population.
13
II. DEMOGRAPHICS AND CULTURE

Demographic information can help plans recognize and appreciate the health care needs of the
disability population and inform plans as to the kinds of data they should collect in order to
assess disability-related quality improvement measures necessary within the plan. As this report
takes a bird's eye view of managed health care services for Californians with disabilities, plans
and providers should keep in mind the number of factors, in addition to having a disability, that
comprise individuals' identity and influence the way they use and benefit from health care
services, including: age, gender, race or ethnicity; lifestyle; and culture or belief system.
Understanding the interplay of these factors with one's disability allows providers to better
anticipate the type, severity and course of a disability, advise a patient about what to expect, and
offer preventive health care that will allow the person to live a healthy lifestyle. Managed care
plans will also benefit from taking these factors into consideration while (1) creating benefits
packages, care coordination and disease management programs; (2) hiring health care providers
from a multitude of backgrounds; and (3) communicating with enrollees.
Disability Type
According to the Census Bureau, approximately six million Californians (one in five people)
have a long-lasting condition or disability.47 The Census Bureau asks an extensive set of specific
questions relating to physical, mental, and work-related activities. A person has a disability if he
or she has difficulty performing certain functions (seeing, hearing, talking, walking, climbing
stairs, and lifting and carrying), has difficulty performing activities of daily living, or has
difficulty with certain social roles (doing school work for children, working at a job and around
the house for adults.)
Among Californians with disabilities, 7.2% report having physical limitations, such as difficulty
walking or climbing; 4.6% report having mental disabilities, such as difficulty with cognitive
tasks like learning, remembering, or concentrating; 3.2% report having sensory disabilities, such
as vision or hearing loss; and 2.5% report having self-care disabilities, such as difficulty in
caring for personal needs like bathing and dressing.
In the 2000 Census, 46.3 percent of the population with any disability reported having more than
one disability. The disability most likely to be linked to multiple conditions was the self-care
measure; 97% of individuals who reported having this type of condition also reported having one
or more of the other disabilities.
Age
Of the demographic factors (age, race, ethnicity, and gender), age is the factor that most affects
the probability of having a disability. The 2000 Census shows that disability rates rise
significantly with age. For instance, 54% of people over the age of 65 report having a disability
compared to 19% of people under the age of 65. The proportion of adults age 65 and older is
considerably increasing due to medical advances that prolong life. The Census Bureau predicts
that if current trends continue, Americans 65 years and older will constitute 20% of the total
population by the year 2030 compared with about 12% currently.48   Although medical advances
14
II. DEMOGRAPHICS AND CULTURE
will have some mitigating effect, the growth of this population will result in a substantial
increase in the number of individuals with a disability.
Figure 1:
Percentage of Civilian Noninstitutionalized Population with Any
Disability by Age and Sex (2000)
Source: U.S. Census Bureau, Census 2000 Summary File 3.
¦ Male
? Female
5 to 15
16 to 64
65 and
older
7.2%
3%
19.6%
17.6%
40.4%
43.0%
As people age, their medical health status deteriorates. Although there are many exceptions,
individuals with certain kinds of physical disabilities generally experience the effects of aging
20-25 years earlier than non-disabled individuals.49 Research explaining this phenomenon is
only beginning to develop. However, some studies indicate that premature medical aging
correlates with the following: over-compensation by some parts of the body; under-utilization of
other parts; and secondary conditions. Effects of over-compensation are common where an
individual more heavily relies on functioning body parts to make up for lost motor functions
elsewhere. Overuse can result in increased pain and fatigue of joints, muscles and tendons.
Under-utilization commonly occurs where an individual has limited use of one or more parts of
the body; it results in loss of strength, endurance and range of motion. Secondary conditions,
which result in part from the pressures of the primary disability, include pain, fatigue, changes in
function or physical condition, fractures, pressure sores, and depression.
Gender
50
Just over half of all Americans with disabilities are women.     While both men and women report
spine or back conditions as the most common reason for limitations in activity, women report
arthritis as the second highest limiting condition and men report heart disease as the second
highest. For women, heart disease ranks third, followed by asthma, orthopedic conditions,
mental conditions, diabetes, and learning conditions. For men, orthope§dic impairments rank
third, followed by arthritis, asthma, learning disability, mental health disabilities, and diabetes.51
15
II. DEMOGRAPHICS AND CULTURE
52
Figure 2:52        Number and Percentage of Civilian Noninstitutionalized Population
with Any Disability by Sex
Females - no disability
105.3 million
Females with disability
28,6 million
21,3% of female population
Total people with disability
53,9 million
20,6% of total population
\
Males with, disability
25,3 million
19,8% of male population
Males - no disability
While recent studies indicate that all people with disabilities receive less health care than
their non-disabled peers, the types of disparities in health care treatment differ for men and
women. For example, women with disabilities are less likely than women without
disabilities to receive mammograms within recommended guidelines.     This disparity is due
in large part to inaccessible mammography equipment. Stereotypes also play a major role in
health care disparities. For instance, women with disabilities are less likely than women
without disabilities to receive necessary pap smears and other reproductive health care
services because providers assume that people with disabilities are not sexually active. Such
stereotypes also affect men, who are more likely than women to go undiagnosed with
depression, resulting in a higher probability that men will commit suicide. In fact, recent
research shows that 20-24 year old males were seven times as likely to commit suicide as
their female peers and males over the age of 65 were approximately six times more likely to
commit suicide than their female peers.54
Race and Ethnicity
Prevalence of disability among racial and ethnic groups varies significantly. Black and African
Americans, American Indians, and Alaska Natives report the greatest occurrence of disability at
a rate of 24.3%, while Asians report the lowest occurrence at 16.6%. In between, are Caucasians
at 18.5% and Hispanics and Latinos at 20.9%.
16
II. DEMOGRAPHICS AND CULTURE
Figure 3:     Number and Percentage of Civilian Non-institutionalized Population Aged 5
and Older with Any Disability by Race or National Origin (2000)
Race and National Origin	Total Number	Percent
Total...................................	257,167,527 195,100,538 30,297,703 2,187,507	19.3 18.5 24.3 24.3
White alone........................		
African American alone.... American Indian/Alaska Native alone.........................		
Asian alone.........................	9,455,058 337,996 13,581,921 6,206,804 31,041,269 180,151,084	16.6 19.0 19.9 21.7 20.9 18.3
Native Hawaiian/ Pacific Islander alone......................		
Some other race alone........ Two or more races.............. Hispanic or Latino............. White alone, not Hispanic or Latino.............................		
		
Source: U.S. Census Bureau, Census 2000 Summary File 3.		
Despite the varying level of disability prevalence among different races and ethnicities,
experiences in health care disparities are remarkably consistent. One recent report states that
racial and ethnic disparities in health care persist regardless of income or insurance.55 For
example, when compared with peers of the same income and insurance level, African Americans
experience higher rates of mortality from heart disease, cancer, cerebrovascular disease, and
HIV/AIDS than any other racial or ethnic group in the United States. American Indians
disproportionately die from diabetes, liver disease and cirrhosis, and unintentional injuries.
Hispanic Americans are almost twice as likely as non-Hispanic whites to die from diabetes.
Asian-Americans disproportionately experience rates of stomach, liver, and cervical cancers.56
The causes of these health disparities relate to a complex mix of socioeconomic differences,
variations in health-related risk factors, environmental degradation, and direct and indirect
consequences of discrimination. When compared to Caucasians, racial and ethnic minorities, as
a whole, are less likely to have health insurance, more likely to experience difficulty getting
health care, and more likely to have fewer choices regarding where to receive care. Even at
equivalent levels of access to care, racial and ethnic minorities experience lower quality health
services and are less likely than Caucasians to receive routine medical procedures. For example,
racial and ethnic minorities are less likely to receive appropriate cardiac medications necessary
to undergo bypass surgery, appropriate cancer diagnostic tests and treatments, major diagnostic
and therapeutic interventions for stroke, kidney dialysis or transplants, placement on transplant
waiting lists, antiretroviral therapy, and other state-of-the-art HIV treatments that may delay the
onset of AIDS.57
17
II. DEMOGRAPHICS AND CULTURE

Culture
One in ten persons living in the United States was born in another country. At a rate of 15.8%,
California has a higher percentage of non-citizens than any other state in the country. These
cultural backgrounds are currently underrepresented in the health care professions. Therefore,
many persons with disabilities are served by professionals from a culture that may be very
different than their own.
Culture impacts an individual's religious, aesthetic, moral, political, and philosophical views,
among many other things. Enrollees may come from backgrounds where a social class system is
openly practiced and thus may distrust information coming from someone judged to be from an
inferior social class. Individuals from certain cultures may perceive disease or disability as a
curse, a punishment for wrong-doings in a past life, or the intervention of a supernatural being or
evil spirit, which may affect the way they approach discussing or seeking care for a disability.
Some individuals may also want to integrate Western medicine with health care rooted in their
own culture, while others may be more comfortable with alternative forms of health care, and
still others may only want to use a physician of a particular gender.
A crucial outgrowth of the disability movement is a culture of disability. Reacting to a history of
segregation and seclusion, the disability culture emphasizes independence and participation in
community life and supports the development of programs that can help individuals live in their
own home, seek meaningful employment, and receive services in the community. Disability
culture emphasizes disability as an attribute of a whole person, rather than as a medical condition
that suggests part of the person is ill and in need of a cure or else incurable. Different kinds of
disability also have their own subcultures. In the deaf community, the Deaf culture has its own
language and customs and does not necessarily view deafness in terms of disability.
Socio-economic Factors
Poverty negatively affects nutrition, stress, and the ability to access health care and other needed
services. These ravaging effects of poverty are reflected in high rates of acute and chronic
conditions among the poor, including diabetes, heart conditions, HIV, and tuberculosis.
Moreover, as many individuals with disabilities are on limited incomes, out-of-pocket
expenditures, such as co-pays, are extremely difficult to afford. Given the fact that individuals
with disabilities spend four times more money on medical expenses than their peers without
disabilities and are often living on limited incomes, they are more likely than their non-disabled
counterparts to put off or postpone medical care because they cannot afford it, with or without
insurance. Consequently, low-income individuals with disabilities receive less health care than
their non-disabled peers.
Plans and providers must understand the health status of individuals with disabilities in light of
all of the forces that impact their lives. Considering the interplay of factors described above will
allow providers and plans to offer full and equal access to health care services as required by
law.
18
III. SURVEY METHODOLOGY

To evaluate the need for improved access to managed care services, providers and plans must
recognize and appreciate the current status of managed care services received by Californians
with diverse disabilities. To do this, an extensive literature review and informal but extensive
survey of Californians with disabilities who are currently enrolled in managed care was
conducted. The methodology of the survey is described below. In the pages that follow, the
findings of the survey are presented in conjunction with recommendations managed care plans
can implement to improve access to care for this diverse population.
The survey was divided into three sections: (1) background information, such as the name of the
health plan, the number of years in the plan, the number of grievances filed, and access to
primary care providers and specialists; (2) barriers individuals with disabilities commonly
confront in obtaining health care, including physical and architectural barriers, barriers to
effective communication, barriers to obtaining mental health care, and barriers to receiving
quality health care; and (3) demographic data and functional abilities. To capture the needs of
dependents with disabilities, the introduction to the survey indicated that it could be taken by the
parent or caregiver of a person with a disability.
The survey was presented to a cross-disability panel of experts who are knowledgeable about
disability rights law and the health care needs of their community. The panel reviewed the
survey and provided feedback as to substance and accessibility. Disabilities represented on the
expert panel included the following: blindness and partial sightedness; deafness and hard-of-
hearing; and mobility, intellectual, mental health, and chronic or long-term disabilities.
The survey was posted on a secure Internet website and notices seeking survey participants were
sent to over one hundred disability organizations across California. Participants completed the
survey on the website, on a print copy, or over the phone with a representative from DRA. The
survey was available for eight months during which time 384 individuals with disabilities
completed the survey.1 The research team subsequently analyzed the survey results through the
use of a database for quantitative information as well as coding for qualitative information.
A suggested set of recommendations was developed and submitted to a multidisciplinary panel
of professionals, representing diverse disabilities, ages, ethnic groups, geographic locations, and
managed care plans. The panel's input with respect to the substance and relevance to their
communities is incorporated into the recommendations suggested throughout this paper. These
recommendations are not intended to be exhaustive. In fact, there are undoubtedly other
important steps a plan can take based on new and innovative models of accessible managed care
appearing around the nation. The steps a plan ultimately takes will be based on many factors,
most importantly its own knowledge of what can work. At the outset, however, plans should
organize a task force to survey enrollees about their needs and develop a responsive plan (see
"Implementation" section).
1 The Bay Area had the greatest participation at 48%, followed by Los Angeles at 19%, Northern California at 14%,
Southern California at 11%, and Central California at 8%.
19
IV. SURVEY DEMOGRAPHICS
Because of the complexities of a self-selected survey, the percentages reflected in the survey
demographics do not necessarily reflect the demographic make-up of managed care beneficiaries
in California or the relative contentment of different disability communities with their care.
However, the survey results support previous beliefs that individuals with disabilities are
enrolled in managed care and are confronting access barriers.
The most commonly reported disability was physical disability at 47%.   Physical disabilities
included individuals who use mobility equipment such as wheelchairs, scooters, canes, and
crutches. Individuals with chronic disabilities, such as chronic obstructive pulmonary
conditions, chronic pain or arthritis, or HIV/AIDS also had a high reporting rate at 32%.
Individuals with psychological disabilities, including bi-polar disorder, depression, anxiety,
panic disorder, and obsessive compulsive disorder, had a reporting rate of 18%. Individuals with
developmental disabilities, including autism and down-syndrome, had a reporting rate of 12% as
did individuals with learning disabilities. Individuals who were hard-of-hearing or partially
sighted had a reporting rate of 11% while individuals who were deaf had a reporting rate of 7%
and individuals who were blind had a reporting rate of 4%. The table below shows the spread of
reported disabilities.
Figure 4:        Percentage of Survey Participants by Disability
100%-									
90%-									
80%-									
70%-									
60%-									
50%-		47'	/«						
40%-				32% ^__					
30%-					I	18%			
20%-				12%	1	Hi    12%	n%      n%	16%	
10%-					1	Wk       mi       7%	M       ^        4%	JJ	
	Physical			1                    1                    1                    1                    1 Developmental Chronic Illness   Psychological        Learning               Deaf			i          i          i Hard of               Visual                 Blind Hearing          Impairment	i                 i Other	
2 Of the 384 participants, 180 reported a physical disability; 46 reported a developmental/intellectual disability; 123
reported a chronic/long-term disability; 69 reported a psychological disability/mental illness; 47 reported a learning
disability; 27 reported being deaf and 42 reported being hard-of-hearing; 43 reported being partially sighted and 17
reported being blind. These figures are greater than 384 as participants can have more than one disability.
20
IV. SURVEY DEMOGRAPHICS
The three largest managed care plans in California, Kaiser Permanente, Blue Cross, and Blue
Shield,58 also had the highest representation in this survey at 35%, 16%, and 14% respectively.
The pie chart below shows the breakdown of enrollee participation in a variety of plans.
Figure 5:        Percentage of Survey Participants by HMO
Other Don't Know 13% 2%             13%	Aetna 3%            Blue Cross	
We™alth^^lll		
		
7%      ^^^^H	Sj^^HHH Blue Shield	
		Illlll      16%
	X	^y 1%
Kaiser ^**s 35%		'   Health Net 8%
Of all the respondents, 26% reported their health care was excellent, 49% reported their health
care was good, 21% reported their health care was fair, and 4% reported their health care was
poor. Numerous factors contributed to these ratings, including access to specialists, physical
access to facilities, provision of auxiliary aids and services, and overall provider training and
expertise.
Female participants accounted for 67% of survey responses while male participants consisted of
33%. At 71%, most survey participants were Caucasian. The remaining 39% of participants
consisted of numerous races and ethnicities, including Hispanic (10%), African American (5%),
Asian (4%), Native American (3%), Bi-racial (2%), Immigrant (1%), and other (4%).
The following pages summarize the survey results as a means to providing a snapshot of the
kinds of disability access barriers that exist in California managed care. In each chapter, the
survey results are followed by descriptions of promising practices instituted around the country
and recommendations, based on these promising practices that managed care plans can use to
guide analysis and development of their own policies and procedures.
21
V. SURVEY RESULTS AND RECOMMENDATIONS
STRUCTURAL BARRIERS
'
Structural barriers, such as architectural design and construction, inaccessible medical
equipment, and inaccessible or poor signage impede access to health care for individuals with
many different kinds of disabilities. Individuals with mobility disabilities are particularly likely
to confront architectural barriers that prevent them from even entering a provider's facility.
Even if a person with a disability is able to enter, innumerable barriers may exist inside that
facility, including inaccessible waiting, exam, and restrooms and inaccessible diagnostic
equipment. While inaccessible or poor signage affects everyone, it particularly impacts
individuals with vision disabilities.
Survey Results for Facility Design and Construction
Of survey participants with mobility disabilities—those who use wheelchairs, walkers, canes, or
crutches—approximately 17% reported difficulty accessing facility entrances. One participant
reported, "The first time I went [to my doctor's office] the accessible entrance was locked."
Another participant reported that providers "store items (boxes, carts, equipment) in their narrow
office hallways, which makes wheelchair access impossible." Other reported barriers include
excessively sloped ramps leading to the facility, heavy doors that lacked an automatic opener,
doorways too narrow to navigate with a wheelchair, and excessive thresholds. Of participants
with vision disabilities (blind or partially sighted), 35% reported inaccessible signage. In
particular, participants reported that signs offering navigational information often lacked Braille,
large print, or symbols that afford communication of necessary information.
With respect to waiting rooms, 29% of participants with mobility disabilities reported
experiencing barriers. One participant commented that there is "no room for wheelchairs in the
waiting rooms, so some providers ask me to wait (or leave my chair) unattended in the hallway."
Additionally, participants reported moveable objects, such as furniture or trash cans, impeding
paths of travel and access to brochure and magazine racks; excessively high reception counters;
and lack of clear floor space. Similarly, 26% of individuals with vision disabilities found
barriers in waiting rooms related to inaccessible signage.
The most commonly reported barriers were in exam rooms, with 33% of participants with
mobility disabilities reporting difficulty entering and maneuvering exam roo<abbr title="Ms"><a href="/site_help/glossary.php#ms" title="Ms" class="glossary">Ms.</a></abbr> Many
participants stated that their providers' offices did not have any accessible exam roo<abbr title="Ms"><a href="/site_help/glossary.php#ms" title="Ms" class="glossary">Ms.</a></abbr> One
participant explained his experiences when he said, "The exam rooms won't accommodate
wheelchairs and have the door closed at the same time." Even when an accessible exam room
existed, barriers remained. For instance, one participant said, "They put someone else in the
accessible room, and then required me to wait longer than able-bodied people by refusing to ask
the person in the accessible room to move."
Of wheelchair users, 27% reported difficulty with accessing laboratories (testing facilities where
providers take or analyze medical tests, such as blood and urine analysis). The most commonly
reported barriers included protruding objects, lack of ramps, and narrow doorways. The chart
below shows the percentage of survey participants who reported difficulty with main entrances,
waiting rooms, exam rooms, and laboratories.
22
V. SURVEY RESULTS AND RECOMMENDATIONS:
STRUCTURAL BARRIERS
S:
Figure 6:		Percentage of Survey Participants with Mobility Physical or Moveable Barriers at Facilities			Disabilities Experiencing				
									
100%-	/								
90%-	/								
80%-	/								
70%-	/								
60%-	/								
50%-	/								
40%-	/	29%                                   i£%							
30%-		17%		¦	22%				
20%-	/	m		¦					
10%-		I___		¦					
	/							/	
									
	Main Entrances         Waiting Rooms           Exam Rooms             Laboratories								
Survey Results for Diagnostic Equipment
In addition to barriers resulting from facility design and construction, many participants reported
lack of access because of inaccessible diagnostic equipment, such as examination tables and
chairs, scales, and x-ray equipment. Individuals with disabilities are denied access to potentially
life-saving diagnoses when diagnostic equipment is inaccessible.
Accessible exam tables have many different features to help patients with disabilities receive the
same thorough exam as someone without a disability. The most common feature is that the table
lowers to approximately 16-17 inches to allow an individuals to transfer easily from their
wheelchair or mobility device. If a table cannot be lowered, staff may need to assist in
transferring the patient onto the table, which must be undertaken properly to avoid injury for
both the patient and staff. Some individuals with conditions such as spasticity or obesity may
also require a wide surface area so that they do not fall off the table. People with certain back
and neck conditions may require exam tables with multi-adjustable backs to support them while
they are lying down; otherwise they may not be able to lie back or may do so in a compromised
or painful position. Accessible gynecologic exam tables offer side, foot, leg and knee support,
through items such as padded boot stirrups. Finally, some individuals with spasticity may need
to be secured when they are on a table so they do not fall off. For more information on the
importance and types of accessible exam tables, see "Importance of Accessible Examination
Tables" at www.cdihp.org/products.
23
V. SURVEY RESULTS AND RECOMMENDATIONS:
STRUCTURAL BARRIERS
S:
Accessible scales afford health care providers the ability to weigh a patient in a seated position.
Such scales contribute to a provider's ability to monitor weight, thereby (1) avoiding improper or
missed diagnosis, incorrectly prescribed medication, or incorrectly administered anesthesia and
(2) improving management of secondary conditions such as obesity, cardiovascular disease, high
blood pressure, high cholesterol, and diabetes. For more information on the importance and
types of accessible scales see "Importance of Accessible Weight Scales" available at
www.cdihp.org/products.
Accessible x-ray equipment comes in various for<abbr title="Ms"><a href="/site_help/glossary.php#ms" title="Ms" class="glossary">Ms.</a></abbr> For example, unlike typical mammography
equipment that requires a woman to stand up, accessible mammography equipment allows a
woman to sit during the mammogram. Such equipment is vital given recent research showing
that among all age groups, women with disabilities were less likely than women without
disabilities to have had their most recent mammogram as part of a routine check-up.59
The survey asked whether people confronted barriers with exam tables, exam chairs, and
wheelchair scales. Exam tables were inaccessible to 69% of wheelchair users and 46% of cane,
crutch, and walker users. The height of exam tables was the most common anecdotally reported
complaint. In fact, one participant reported, "It takes a village to get me on and off an exam
table, which means I don't go to preventive care appointments."
While the survey did not specifically address accessible gynecologic exam tables, several
participants described difficulties using such tables. For instance, one participant noted, "A
couple of years ago they tried to give me a pap smear but it was too uncomfortable. They
couldn't figure out how to do it safe so I wouldn't fall off." Studies show that women with
mobility disabilities receive fewer pelvic exams than women without disabilities, in part due to
inaccessible exam tables and the required positioning of legs in stirrups.60 Many women who
have disabilities such as stroke, spina bifida, multiple sclerosis, cerebral palsy, orthopedic
injuries, and other neurological conditions experience range of motion restriction and spasticity,
both of which interfere with use of stirrups.
Exam chairs presented similar barriers to 43% of wheelchair users and 18% of cane, crutch, and
walker users. One participant stated, "Exam chairs are impossible to get in and out of and I have
to have my husband or an office worker help me." A commonly reported problem was the lack
of clear floor space next to the chair that would allow the patient to make an unassisted transfer.
Scales were inaccessible to 60% of wheelchair users and 35% of cane, crutch, and walker users.
One participant could not remember the last time she was weighed because she does not have the
"balance to stand on a scale." Another participant reported that even after he had been diagnosed
with diabetes, his physician could not monitor his weight due to the lack of an accessible scale.
Inaccessible x-ray equipment, including a MRI, CT scan, Pet scan, mammogram, bone density
scan, or ultrasound, was a barrier for 45% of wheelchair users and 28% of cane, crutch, and
walker users.
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V. SURVEY RESULTS AND RECOMMENDATIONS:
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Figure 7:        Percentage Survey Participants Who Use Wheelchairs and Report Barriers
_________in Using Exam Chairs, Tables, Scales, and X-Ray Equipment____________
69%
60%
45%
Exam Chairs
Exam Tables
Scales
XRay
Figure 8:        Percentage of Survey Participants Who Use a Cane, Crutches, or Walker
and Report Barriers in Using Exam Chairs, Tables, Scales, and X-Ray
_________Equipment_________________________________________________
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
46%
18%
35%
28%
Exam Chairs
Exam Tables
Scales
XRay
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V. SURVEY RESULTS AND RECOMMENDATIONS
STRUCTURAL BARRIERS
Removing Architectural Barriers
'
There are many incentives for managed care plans to support the removal of architectural
barriers. First, studies have shown that it is good for business because the buying public supports
accessibility.61 Second, as the aging population significantly increases, it will require greater
accessibility features in health care facilities. Third, removal of architectural barriers serves
everyone, regardless of whether they have a disability. For instance, people carrying heavy
items appreciate automatic door openers and people pushing strollers appreciate ramps and clear,
wide hallways. Fourth, access features can decrease the risk of work place injuries for health
care staff. For instance, an adjustable height exam table reduces the amount of lifting involved
in transferring a patient from a wheelchair to an exam table, thereby reducing the risk of back
injury. Fifth, accessible design avoids costly litigation brought under federal and state access
laws. Finally, the removal of architectural barriers facilitates health care providers' jobs because
it enables them to provide the best, most efficient service and to provide the same quality of care
to their enrollees with disabilities as to everyone else.
The major design approach to achieving physical access is commonly referred to as barrier-free
design. This theory focuses on addressing the specific needs of individuals with disabilities and
on developing access features specific to the disabled population.
Compliance with the ADA and state access laws effects barrier-free design. The ADA requires
all newly constructed facilities as well as all facilities where physical alterations occurred after
January 26, 1992, to be readily accessible to and usable by individuals with disabilities.
"Facilities" means all portions of buildings, structures, sites, complexes, equipment, walks,
passageways, parking lots, and other real property. Accordingly, the entirety of healthcare
providers' properties open to the public must be accessible to persons with disabilities. To help
health care providers determine what constitutes access and what features need to be provided to
achieve that access, the ADA authorizes a set of architectural guidelines called the Americans
with Disabilities Act Accessibility Guidelines for Buildings and Facilities ("ADAAG"). A copy
of the ADAAG may be found at this website: http://www.access-board.gov.
Title 24 of the California Code of Regulations, known as the California Building Standards Code
or "Title 24," also contains regulations that govern construction of buildings. The Division of
State Architect ("DSA") promulgates these regulations, which address buildings, structures,
sidewalks, curbs, and related facilities. Many of the access requirements under the ADA are
incorporated into Title 24. More information about the DSA and Title 24 can be found at this
website: http://www.dsa.dgs.ca.gov/default.htm.
The health care provider is responsible for barrier removal where the health care provider owns
or controls the property to be modified. The health care provider and landlord are jointly
responsible for such modifications where the health care provider is a tenant. The responsibility
of the managed care plan to fund barrier removal is dependent on the contractual arrangement
between the health care provider and the managed care plan. However, where there is no explicit
contractual statement regarding barrier removal, the amount of control the managed care plan has
over the facility will determine the direct responsibility the managed care plan has for making
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V. SURVEY RESULTS AND RECOMMENDATIONS:
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that facility accessible. For instance, staff and group model HMOs should ensure barrier
removal because the HMO typically owns and operates the facilities. In direct contract, network,
and IPA models, health care providers should ensure barrier removal because they operate the
facilities. In the latter case, however, because the HMO contracts with the providers, the HMO
may still be legally liable if its health care providers do not comply with barrier removal laws.
Therefore, all managed care plans should strongly encourage their providers to make their
facilities fully accessible and compliant with federal and state law.
Eliminating architectural barriers in health care environments does not have to be expensive. In
new construction, accessibility features generally do not increase costs. Hence, incorporating
accessible design into construction on the front end is the most cost-effective method to ensure a
barrier-free environment. However, even in existing structures, many modifications can be
inexpensive. In addition, the Internal Revenue Code includes tax incentives for businesses that
incur expenses in removing barriers associated with increasing accessibility for individuals with
disabilities. The "Tax Deduction to Remove Architectural Barriers to People with Disabilities
and Elderly Individuals" allows a deduction for qualified architectural and transportation barrier
removal expenses not to exceed $15,000 for any taxable year.62 The "Disabled Access Tax
Credit" is available to small businesses with 30 or fewer employees or $1 million or less in gross
annual receipts. This provision allows a tax credit each tax year of 40% of access expenditures if
they exceed $250 but do not exceed $10,250 and if they are undertaken for the purpose of
complying with the ADA.63 For more information on funding barrier-removal see "Improving
Accessibility with Limited Resources" at www.cdihp.org/products.
As a general matter, the health care provider must provide a facility that is "readily accessible
and usable" where it is possible to do so in a "readily achievable manner." This requirement sets
a high standard, as it is intended to ensure that consumers and employees of places of health care
facilities are able to get to, enter, and use the facility. At a minimum, the standard requires that a
physician's office provide ready access to waiting areas, an accessible bathroom, and some
accessible exam tables.64 If providing access through barrier removal is not "readily
achievable," the ADA requires health care providers to provide alternative solutions to achieving
access for individuals with disabilities. For instance, the health care provider can provide
services on the first floor of a building that does not have an elevator, provide services in another
accessible facility, or make home visits.
Complying with the law and providing full and equal access requires working with experienced
access consultants. Such consultants must have experience and training in access compliance
with state (Title 24) and federal (ADAAG) law. Additionally, managed care plans should
consider access consultants who have specific experience working with health care facilities.
Below are some specific examples and explanations of federal and state access requirements that
are particularly important to health care providers. There are many other access requirements
that are not discussed here and the examples below should not substitute for consulting legal
counsel and experienced access experts. Further information about federal and state legal
obligations can be found at the following websites: http://www.usdoj.gov/crt/ada/adahom1.htm
and http://www.dsa.dgs.ca.gov/default.htm.
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Parking spaces must be accessible. The ADAAG specifies standards for parking
space design and a formula for determining the appropriate number of accessible
spaces. If it is not readily achievable to comply with this requirement, the health
care facility should consider valet parking as an alternative method of providing
access.
Curb cuts or curb ramps must be accessible. Curb cuts enable individuals who
use wheelchairs or mobility devices or who cannot use steps to have access to
health care facilities. The ADAAG establishes standards for construction of curb
ramps, including the location and slope of the ramp.
The facility entrance must be accessible. The main entrance should be the
accessible entrance, but if this is not possible, a sign at the main entrance must
indicate where the accessible entrance is located. In multi-use facilities, a
sufficient number of entrances must be accessible so that individuals with
disabilities can reach all services offered at a particular facility. An accessible
entrance includes a ramp (if there are steps), detectable warnings at curbless
walks that cross vehicle traffic, and an accessible passenger-loading zone.
Providing a ramp for one step or even several steps will be inexpensive and
therefore readily achievable for most health care providers. Health care providers
should install a permanent ramp, rather than a portable ramp. However, a
portable ramp may be used if a permanent ramp is not readily achievable. In this
case, the health care provider should install a doorbell to summon an employee to
bring the ramp to the door.
Paths of travel must be accessible. This includes keeping paths free of barriers,
such as furniture or potted plants and using detectable warnings to alert
individuals with vision disabilities of hazards in the path of travel.
Signage must be accessible. Signage with large raised letters and Braille should
direct individuals to accessible entrances, travel routes, restrooms, and rescue-
assistance areas. The ADAAG contains specifications for use of Braille, raised
characters, contrast, Serif, and character height.
Doorways must be accessible, including the width of the doorway, shapes of
handles, threshold at the doorway, and automated door openers. Widening doors,
installing accessible door handles, and making door adjustments to decrease the
strength needed to open the door (such as oiling hinges) are modifications that are
readily achievable for most businesses.
Lobbies, reception areas, and waiting rooms must be accessible. This includes
installing differing counter heights so that wheelchair and scooter users may
communicate with reception staff and complete paperwork; adequate space
around doors; open floor areas dispersed throughout the seating arrangement so
that wheelchair and scooter users may sit out of the path of travel and among
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V. SURVEY RESULTS AND RECOMMENDATIONS:
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other people in the waiting room; and reachable-height display racks, water
fountains, and public telephones.
¦          Exam rooms must be accessible and available to patients with disabilities during
their appointment. Accessible exam rooms include accessible medical equipment
(see below), movable chairs, and a clear floor area with 5-foot turning radius.
¦          Medical equipment must be accessible. Desirable features of accessible
examination tables and chairs include: (1) height-adjustable with a minimum
height of 20 inches or preferably 17 inches from the floor; (2) extra-wide top and
higher weight capacities for larger patients; (3) adjustable handrails; and (4) foot
and leg supports that can be adjusted and locked. This kind of exam table
provides patients with safer transfers. Moreover, in the event a patient needs
assistance with a transfer, this kind of table makes such assisted transfers safer.
When this option is not achievable, the provider must provide assistance in a safe
manner to help patients onto a high table. For more information see "Importance
of Accessible Examination Equipment at www.cdihp.org/products.
¦          Elevators must be accessible. This includes installing raised letters and Braille on
control panels and outside doors; large high contrast signs with raised markings
indicating floor number opposite the elevator; and audible direction and floor-
indicators. Additionally, the door timers should be adjusted so the doors do not
close too quickly.
¦          Restrooms must be accessible. If there are multiple restrooms and not all are
accessible, a sign should indicate where the accessible restroom is located.
Simple steps to increase accessibility include: widening entry and stall doors;
moving obstacles, such as office equipment or plants; rearranging toilet partitions
to increase maneuverability for patients using wheelchairs; installing a raised
toilet seat; installing grab bars near the toilet; repositioning paper towel
dispensers; installing lever handles on sinks; and installing insulation material
around exposed lavatory pipes to prevent individuals who use wheelchairs from
burning their legs while sitting at the sink.
Again, the above examples are not an exhaustive list of federal and state law access
requirements. Instead, they are intended to provide an overview of major barriers that health
care providers must address. For detailed specifications, refer to the ADAAG guidelines and
Title 24 regulations.
Maintaining Accessibility
Once a managed care plan or provider has created an accessible facility, maintaining the features
that provide access is crucial to compliance with federal and state law. Staff should maintain
access with respect to both the facility and accessible medical equipment. Examples of facility
maintenance include: keeping accessible parking aisles clear and ensuring parking spaces are
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V. SURVEY RESULTS AND RECOMMENDATIONS:
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S:
occupied only by eligible users; keeping curb ramps and walkways free of debris; updating
signage as needed; checking door hardware for proper operating forces and closing speed;
keeping trash cans and other obstructions out of accessible routes and clear floor space; keeping
protruding objects out of walkways; and keeping elevator call buttons free of obstructions.
Examples of maintenance for accessible medical equipment include: keeping equipment in
proper working order; keeping equipment clean; and making equipment available to a person
with a disability when appropriate.
Promising Practices
Several managed care plans and providers have set out to create barrier-free environments for
individuals with disabilities. Kaiser Permanente ("Kaiser") is one such plan. Kaiser's particular
model facilitates large-scale barrier removal, however plans based on different models will have
to take additional steps to identify and communicate with provider facilities. Nevertheless,
Kaiser's approach does provide a blueprint for systematic barrier removal. No plan should
implement barrier removal without the assistance of an access consultant or expert.
With the guidance of an ADA committee (consisting of Kaiser enrollees and physicians) and an
architectural access specialist, Kaiser established a plan to implement barrier removal, which was
to begin at two model facilities and subsequently expand out to neighboring facilities. This
implementation plan was based on a two-phase system. Phase One addressed removal of "high
priority" barriers. Phase Two addressed removal of "low priority" barriers.
To determine which barriers were high or low priority, the architectural access specialist, created
a Standard Barrier Survey ("SBS") based on a review of the facilities and federal and state law
requirements.65 The SBS identified and described barriers by type and suggested detailed
possible solutions. Each barrier was assigned a priority code according to the degree and
location of the barrier. Below is an explanation of the barrier code system.
¦          Degree Codes: Letter "A" priority code was assigned to conditions that presented
a potential safety consideration for a significant number of individuals with
disabilities, such as protruding objects or steep ramps. Letter "B" priority code
was assigned to conditions that blocked access to a significant number of
individuals with disabilities, such as lack of curb cuts and ramps as well as
maneuvering clearances at doorways and in waiting and exam roo<abbr title="Ms"><a href="/site_help/glossary.php#ms" title="Ms" class="glossary">Ms.</a></abbr> Letter "C"
priority code was assigned to conditions that limited access to a significant
number of individuals with disabilities, such as inadequate restroom stall width.
¦          Location Code: Numbered priority codes were also assigned according to DOJ
requirements. For instance, priority code "1" was assigned to barriers to access
into facilities. Priority code "2" was assigned to barriers to program access.
Priority code "3" was assigned to barriers in restroo<abbr title="Ms"><a href="/site_help/glossary.php#ms" title="Ms" class="glossary">Ms.</a></abbr> Priority code "4" was
assigned to all other areas of the facility.
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V. SURVEY RESULTS AND RECOMMENDATIONS
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'
¦         Use Code: A use code was assigned to indicate how or by whom the space or
element containing the barrier is used. For instance, a use code was assigned to
general public spaces such as lobbies, restrooms, elevators, exam rooms, and
doctors' offices. Other codes reflected high patient use such as patient restrooms
and outpatient treatment areas (radiology, physical therapy, laboratory, and exam
rooms) as well as low patient use, such as doctor's private offices and staff-only
restroo<abbr title="Ms"><a href="/site_help/glossary.php#ms" title="Ms" class="glossary">Ms.</a></abbr> A variety of other use codes, which are too extensive to detail in this
report, exist.
In a separate survey, Kaiser staff and access experts visited providers at all facilities to survey
their need for different kinds of accessible medical equipment. Based on this survey, Kaiser has
begun ordering accessible equipment for all facilities, including exam tables, lifts, and scales
usable by wheelchair users and individuals with balance limitations. Because existing exam
tables did not fit Kaiser's specifications, Kaiser worked with one exam table maker to develop a
more affordable height-adjustable exam table that lowers farther than previous exam tables and
offers contouring and attachments, thus increasing access, safety, and comfort for individuals
with disabilities.
Some aspects of Kaiser's barrier removal are incorporated into the plan below so that other
managed care models can begin the process of ensuring architectural and structural access for
their members.
Action Plan
1.        Establish a Uniform Access Policy
The policy should state the following:
(1)             All facilities must comply with federal and state access requirements.
(2)              Compliance includes barrier-free design and barrier-removal as well as
maintenance of all access features.
(3)              Surcharges imposed on individuals with disabilities for the provision of
access modifications are impermissible and people with disabilities will
not be required to provide their own accommodations.
Disseminate the policy to all member providers and enrollees upon enrollment and
annually thereafter.
Include a clause in all provider contracts requiring the provider to comply with all
federal and state laws prohibiting discrimination against persons with disabilities and
comply with the plan's procedures for ensuring disability compliance (see below).
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V. SURVEY RESULTS AND RECOMMENDATIONS:
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2.         Establish a Blueprint for Barrier Removal
S:
Hire an architectural access specialist (AAS) who has expertise in identifying and
remedying architectural barriers. The AAS should work under contract with plan
administrators, providers, enrollees with disabilities, and the Disability Access
Coordinator (see below) to create a standard blueprint that providers can follow to
ensure architectural access. As part of the blueprint, the AAS should create a
standard compliance checklist regarding common access barriers, which member
providers will complete for their office. The AAS should develop a priority coding
system (see discussion in Promising Practices above) to determine the order of barrier
removal, which should be disseminated to all contracted providers.
3.         Establish a Monitoring Program
Appoint a Disability Access Coordinator ("DAC") who is a permanent employee
within the plan and is familiar with plan policies and procedures. The DAC should
distribute the compliance checklist to the providers, collect the checklist upon
completion, and advise the providers about next steps, which should be based on the
AAS blueprint for recommended barrier removal. The DAC should also refer
providers to resources that can help them accomplish barrier removal as well as
provide information about tax incentives and other financial programs that may help
fund barrier removal.
Hire an external auditor who has expertise in federal and state access requirements.
Once providers report completion of barrier removal, the auditor should conduct
random audits to ensure compliance with federal and state access requirements.
4.         Develop and Distribute a Resource Guide for Barrier Removal
Prepare a resource guide providers can use to implement barrier removal and
distribute the guide to all providers. The guide should include references for access
consultants, retailers of accessible medical equipment, federal and state funding
sources for barrier removal, and tax incentives.
5.         Establish a Training Program
Develop a mandatory training program to instruct providers regarding federal and
state architectural access requirements, maintenance of access features, how to use
accessible medical equipment, and proper lifting and transfer techniques. Provide
accompanying written materials providers and office staff can use for future
reference.
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L EFFECTIVE COMMUNICATION FOR
DEAF & HARD-OF-HEARING
The failure to ensure effective communication for deaf and hard-of-hearing patients and family
members leaves them unable to communicate vital information, including the patient's health
history, and current symptoms, to health care staff. Further, providers cannot explain medical
procedures and options; nor can they obtain a patient's informed consent. This lack of
communication can lead to misdiagnoses or prescription of inadequate or even harmful
treatment. Without effective communication, survey results demonstrate that deaf and hard-of-
hearing patients find health care interactions frustrating and difficult.
Survey Results for Interpreter Access
Lack of access to sign language interpreters was the most common complaint of survey
respondents. Approximately 26% of individuals who are deaf reported difficulty getting an
interpreter for their medical appointments. While individuals identified a variety of problems
accessing interpreters, most of the problems concerned the lack of interpreter services or the
inappropriate provision of an interpreter.
Specialists presented the most difficulty for individuals who required interpreters. Many
individuals reported that their primary provider made interpreters available but that their
specialists would not do the same. For instance, one individual noted, "I was referred to the
specialist from my doctor. When I contacted the specialist to get an interpreter, I was given a
runaround so I never went to the specialist due to barriers with not providing an [American Sign
Language] interpreter." Another participant complained, "It's the specialists that the provider
refers me to that won't provide the interpreter. My provider says that the specialist should
provide the interpreter but then it's a battle after that." In situations where an interpreter was not
provided, some reported having to rely on family members, which is illegal and can have many
serious consequences, as described at the end of this section.
In one circumstance, a provider "sent a nurse who knew some sign language. She is not an
interpreter and often does not understand me." Others reported receiving an accommodation
they did not need or could not use. For example, one individual who is hard-of-hearing said the
managed care plan "has asked if I need an interpreter and I say no—they have provided
[American Sign Language] interpreters but I do not sign."
Survey Results for Tele-Communications
Another common complaint among survey respondents relates to difficulty contacting the
provider over the phone. Many providers require callers to use an automated menu before
connecting with a live person. This is inaccessible to callers who rely on a California Relay
Center ("CRC") to contact their providers. The CRC is a service that allows a Teletypewriter
("TTY") user to communicate over a telephone with a person who is not using a TTY (see
description below). The use of this service results in a time delay in communications, which
interferes with the navigation of an automated menu. One individual reported having to "redial
the number 6-8 times before getting to the appropriate department." The lack of staff training
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V. SURVEY RESULTS & RECOMMENDATIONS:
L EFFECTIVE COMMUNICATION FOR
DEAF & HARD-OF-HEARING
regarding CRCs is another barrier for TTY users. For instance, one survey respondent stated that
because "the office staff is not familiar with the Relay [they] often times will hang up. It's
frustrating having to go through the menu system again and then be transferred to the bottom of
the call list." Unfamiliarity with TTYs also results in staff ignoring TTY calls. One respondent
explained, "It is often difficult to reach my provider by way of TTY as they seldom answer
incoming TTY calls; my calls often get disconnected."
Providing Effective Communication
An individual who is deaf3 or hard-of-hearing may rely on any one of a number of different
communication methods and may or may not require an auxiliary aid or service to communicate.
For instance, people who are deaf generally cannot understand speech sounds through the ear
and may use sign language, speech reading, assistive devices, or a combination of these to aid
communication. People who are hard-of-hearing have some hearing. While some do not use a
hearing aid, others may use residual hearing, hearing aids, lip-reading, assistive technology (see
below), sign language, or a combination of these to aid communication.
Healthcare providers are legally required to offer an auxiliary aid or service that enables the
patient to both understand the content of the provider's communication and convey thoughts and
opinions to the provider.66 A variety of aids and services exist to afford effective
communication, including sign language interpreters, visually delivered materials, computer-
aided transcription, telephones compatible with hearing aids, written materials, telephone
handset amplifiers, assistive listening devices, closed caption decoders, open and closed
captioning, teletypewriters (TTYs), speech-to-speech, video-relay services, and videotext
displays.67 In choosing the appropriate auxiliary aid or service, the health care provider should
consult with the patient about the type of aid or service necessary to achieve effective
communication. The provider is not required to provide the aid or service the individual with a
disability prefers, so long as the provider offers one that is effective for full communication.
Effective communication is measured by the nature, length, and complexity of the
communication taking place. In most circumstances, if the patient uses sign language the
provision of a qualified sign language interpreter is necessary to achieve effective
communication in a medical setting.
A health care provider must treat the cost of providing auxiliary aids and services as part of
business overhead and cannot charge patients for such services. This is true even if the cost of
providing an aid or service exceeds the cost of the health care visit. If the cost is an undue
burden, the provider must offer an alternative aid or service to ensure effective communication.
3 There is disagreement among people who are deaf about whether or not to capitalize the "D" in "deaf."
According to the National Association for the Deaf, it is a matter for people with hearing loss to decide whether to
treat deafness as an audiological perspective or as a cultural lifestyle. This report uses the lowercase deaf when
referring to the audiological condition of not hearing and the uppercase Deaf when referring to a particular group of
deaf people who share a language — American Sign Language (ASL) — and a culture.
34
V. SURVEY RESULTS & RECOMMENDATIONS:
L EFFECTIVE COMMUNICATION FOR
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Provision of an auxiliary aid or service is rarely an undue burden in light of the fact that the
health care provider's overall financial resources—not the cost of the individual's appointment—
is the relevant determinant. Moreover, health care providers can claim a tax credit of up to 50%
of eligible access expenditures that are over $250 but less than $10,250. The amount credited
may be up to $5000 per tax year. Eligible access expenditures include the costs of providing
interpreters, purchasing TTYs, and providing other auxiliary aids and services.68
Sign Language and Oral Interpreters
The ADA requires that a sign language interpreter be "qualified," which is generally interpreted
to mean that the interpreter is (1) fluent in the sign language the patient uses and (2) impartial.
Hiring only certified interpreters ensures that an interpreter meets the "qualified" status. To
become certified, interpreters go through rigorous training, not only in sign language, but also in
professionalism, confidentiality, and neutrality.
Because there are many different kinds of sign language, office staff should schedule the kind of
interpreter an individual requests. It is also important to understand that, for many individuals
who rely on sign language, written English may not be accessible (see note-writing discussion
below). This is because American Sign Language ("ASL"), the most commonly used sign
language in California, bears no structural resemblance to English. In addition, ASL is
commonly the primary language for individuals who are deaf; thus, while many ASL-users are
also fluent in English as a second language, the average ASL-user has a limited knowledge of
English words. In fact, the average deaf high school graduate reads and writes at a fourth grade
level.69 There are also foreign sign languages, such as Chinese and Spanish sign language, and
interpreters skilled in each.
Some deaf individuals, particularly those who learned sign language after learning English, use
Exact English Sign Language ("ESL"). Like ASL, ESL relies on signs to speak and understand
speech. However, ESL follows English grammar, structure, and phrasing; therefore written
English is accessible. Individuals who rely on ESL generally cannot understand ASL.
Tactile interpreters are used by people who are Deaf/Blind. A tactile interpreter makes signs by
placing his or her hand directly on the hand of the person reading the sign language.
Finally, some individuals who rely on lip-reading use oral/aural interpreters. An oral interpreter
enunciates, repeats, or rephrases a speaker's communications using natural lip movements and
gestures. The interpreter rephrases the speaker by choosing words that are easier to lip-read.
The second aspect of "qualified" is the requirement of impartiality. To perform their duties
effectively, interpreters must remain neutral to the situation. This is one reason why the health
care provider must not ask the patient's family members and friends to act as an interpreter.
Requiring a family member or friend to interpret not only violates the ADA but also may violate
confidentiality; equally important, it can create emotional strain that makes accurate
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V. SURVEY RESULTS & RECOMMENDATIONS:
L EFFECTIVE COMMUNICATION FOR
DEAF & HARD-OF-HEARING
communication of important information difficult. Although some individuals may volunteer to
have a family member interpret, or even prefer it, all individuals should be offered the option of
a third-party interpreter.
Some HMOs have opted to hire interpreters to serve on staff, sometimes in dual capacities.
Having a staff interpreter can present a conflict of interest because an interpreter must represent
both the provider and the patient neutrally. If it is necessary to have staff interpreters to facilitate
access, be sure the interpreters are certified.
The National Registry of Interpreters for the Deaf ("RID") publishes a membership directory and
has established a network of state and local affiliate chapters. State RID chapters can supply
providers with a list of local interpreters, along with their level of certification. Most cities and
communities also have non-profit local and regional organizations that supply information and
referrals to qualified sign language interpreters. Private interpreter referral services are also
available, although usually at a higher cost than non-profit agencies.
Lip-Reading
Some deaf and hard-of-hearing individuals communicate via speaking and lip-reading. Studies
have shown that lip-readers understand only about one-third of what is being spoken to them,
making miscommunication common. Additionally, lip-reading can be hindered by
environmental factors such as the distance and viewing angle from which the speaker is
observed, the background illumination of the room, accents, speech impediments, and mustaches
or hand gestures covering the mouth.70 It is important for providers to be familiar with how
these factors impact communication and to learn how to minimize this impact.
Note-Writing
While note-writing is a means of communication for some deaf or hard-of-hearing individuals, it
can be ineffective. First, since many ASL-users are not fluent in written English, writing a note
in English is inaccessible to them. Evidence shows that deaf individuals who are not fluent in
English tend to feign understanding when their physicians use written notes, rather than reveal
their inability to understand the notes. Moreover, it may be difficult for health care providers to
understand written communications from deaf patients who possess poor written English.
Even if the provider and patient are fluent in written English, note-passing is slow and
cumbersome resulting in use of shorthand to communicate complex medical concepts. As a
result, writing notes should only be relied upon for very simple communication.
TTY and Voice Relay
Health care providers who routinely provide telephone services must make these services
available to individuals with communication disabilities. This can be achieved through many
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V. SURVEY RESULTS & RECOMMENDATIONS:
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ways; the most common of which is a TTY. TTYs contain a keyboard and visual display screen
that enable individuals who are deaf, hard-of-hearing, or have a speech disability to
communicate with anyone over a phone line. TTYs work by alerting the TTY user via a flashing
light or vibrating wrist band. The TTY user proceeds by typing into the machine. If the hearing
person on the other end of the line does not have a TTY, a communications assistant at a
California Relay Center (CRC) reads what the TTY user types to the voice telephone user and
types what the voice telephone user says to the TTY user. Use of CRCs is free-of-charge.
Video Relay Service
Video Relay Interpreting Service (VRI) enables individuals who use sign language to
communicate by sign with voice telephone users. VRI allows the ASL user to access a remote
sign language interpreter, who then relays the signed communication over the phone to the
hearing party. VRI is advantageous because it allows sign language users to fully express
themselves in their primary language
Open and Closed Captioning
Open and closed captioning enable a deaf or hard-of-hearing viewer to understand what is said
on television. Captioning translates the audio portion of video programming into text captions
on a screen. Videotaped training and informational materials must be captioned for viewers who
need captions. Most televisions have a built-in capacity to caption; however, a decoder box can
be attached to older television sets that do not have this built-in capacity.
Computer-aided Real-time Transcription
Computer-aided Real-time Transcription ("CART") enables a deaf or hard-of-hearing individual
who does not use an interpreter to understand what is being spoken at conferences, educational
lectures, or teleconferences. Typically, these users acquire their hearing loss later in life. CART
uses real-time reporters, trained as court stenographers with medical terminology expertise, to
type what is said at a meeting. The typed text immediately appears on a video monitor or
projection screen.
Assistive Listening Devices
Assistive Listening Devices ("ALD") enable late-deafened persons or persons with mild-to-
moderate hearing loss to understand spoken communication. ALDs both eliminate background
noise and eliminate the spatial distance between the speaker and the individual who is deaf or
hard-of-hearing. Individuals who benefit from hearing aids generally benefit from ALDs, while
individuals who have moderate to profound hearing loss do not benefit from ALDs.
Below is a discussion of effective communication for individuals with visual or cognitive
disabilities. The promising practices and related action plan follow the end of this discussion.
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Both managed care plans and providers produce numerous printed documents in order to share
critical information with patients. For instance, managed care plans author and distribute
marketing materials, insurance applications, provider lists, the Evidence of Coverage manual,
and complaint forms, while many providers may create their own consent forms and medical
history for<abbr title="Ms"><a href="/site_help/glossary.php#ms" title="Ms" class="glossary">Ms.</a></abbr> In either case, plans and providers must ensure these documents are available in
alternative formats. The failure to make alternative formats available to individuals who are
blind or partially sighted can result in serious consequences. For example, if a patient signs a
consent form without understanding its contents, the consent is not considered informed under
the law. Moreover, the failure to provide alternative formats excludes individuals who are blind
or partially sighted from equal access to health care, as required under federal and state law.
Survey Results
Survey results show that from the moment managed care plans market their coverage to
consumers, they struggle to provide alternative formats to individuals who require them. For
instance, 6% of participants with visual disabilities (blind or partially sighted) reported that their
managed care plans provide marketing materials in alternative formats. Only 2% of such
participants reported the availability of insurance applications in alternative formats. Equally
low—2%—is the provision of provider lists in alternative formats. 6% of participants with
visual disabilities reported that the Evidence of Coverage manual was available in an alternative
format. One participant stated, "They should be able to put [the Evidence of Coverage manual]
on CD so I can see what has been provided by my insurance." Educational materials were the
most commonly provided alternative format, but even then only 10% of such participants
reported the availability of these materials. 36% of such participants reported that their managed
care plans do not provide any printed materials in alternative formats, while 35% did not know
whether or not their managed care plan provided any documents in alternative formats.
Health care providers also fail to offer printed materials in alternative formats. Of participants
who are blind or partially sighted, 8% reported that their providers offered consent forms in
alternative formats and 5% offered medical history forms in alternative formats. Similar to the
percentage of plans, 38% of individuals with visual disabilities reported that their health care
providers do not provide any alternative formats. One participant stated, "Nothing is provided in
any kind of accessible format, including instructions or appointment cards. I know they have
access to e-mail, and that would be helpful." 28% of participants who are blind or partially
sighted reported that they did not know whether their provider offered any documents in
alternative formats.
Survey participants also reported problems with in-person communication, particularly during
medical appointments. For instance, while 41% of participants who are blind or partially sighted
reported that their providers identified themselves when speaking to the patient, only 28% said
that providers speak to them (rather than pointing) when providing directions to the exam room
or restroom. Once in the exam room, only 26% of participants with visual disabilities reported
that the provider oriented them to the exam room while 46% reported that the provider explained
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V. SURVEY RESULTS & RECOMMENDATIONS:
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or demonstrated procedures before performing the procedure. Moreover, 20% of individuals
with visual disabilities reported that their providers communicated with someone in the room
other than the patient.
Providing Effective Communication
Many different conditions and diseases affect sight, including cataracts, glaucoma, macular
degeneration, and diabetic retinopathy. Each condition impacts the amount of vision an
individual possesses.   For instance, some individuals can see primarily in the periphery of their
visual field, as the center of their vision is blurred or distorted. Other individuals can see only in
the central portion of their visual field, as if looking through a tunnel. Still others can see
somewhat in all sectors of their visual field but see distorted or blurred images.
The kind of visual disability determines, in part, the needed auxiliary aid or service, if any.
Many aids and services exist to provide effective communication through print materials,
including audio-cassette recordings, compact discs, telephone-based information services, large
print materials, Braille, and electronic formats such as floppy disks, emails, and the Internet.
Additionally, adaptive equipment can be used to make print material accessible including
magnifiers, large computer monitors, synthesized computer voice input and output for
computers, and reading machines. Other simple modifications can improve in-person
communication, such as verbalizing directions and procedures or adjusting the amount of
lighting.
In choosing the appropriate auxiliary aid or service, the provider should consult with the patient
to determine the type of aid or service necessary to achieve effective communication. However,
the provider is not required to choose the aid or service the patient prefers, so long as the
provider chooses one that affords effective communication. In many circumstances, the
provision of auxiliary aids and services, such as alternative formats, is easy to accomplish and
financially feasible; therefore, it is unlikely to be an undue burden. However, if provision of an
auxiliary aid or service is an undue burden, the provider need not provide that particular aid or
service, but must offer an alternative accommodation.
Alternative Formats
For standard documents that are used repeatedly, such as consent forms and medical release
forms, it is ideal to have on-hand or be able to quickly produce the document in an accessible
format. It is also extremely helpful to be able to produce written instructions, such as discharge
plans, prescription drug information, and any other self-care protocol, in an accessible format.
For other documents, a two or three-day delay may be acceptable, but it is important to make
every effort to ensure that the delay does not compromise care.
Due to recent technology, alternative formats are increasingly easy to produce and readily
available. Many people prefer floppy disks, compact discs, or e-mailed documents, which are
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extremely easy to produce either individually or in bulk. Providing documents in electronic form
allows the user to access the materials using the method that best works for them. For instance,
some people may use word processing programs to enlarge the print while other people may use
screen-reading software that reads aloud the text of an electronic document. Organizations are
also available to read printed material onto a standard cassette tape or CD Rom. There are many
organizations that can perform this convenient service on a pay or volunteer basis. Large-print
documents (16 point font minimum), which affords readability for many people who are partially
sighted, are easy to produce with most commercial printers. Braille is also easy to produce
through a Brailling service or in-house through a personal computer, Braille translation software,
and Braille printer.
Qualified Readers
A qualified reader recites written information that is not otherwise accessible with technology.
Unlike sign language interpreters, a reader does not interpret information. Because there is not
currently a requirement for certification of readers, a reader may be someone on staff, a
volunteer, or someone hired specifically to work as a reader. The term "qualified reader" simply
means that the person is capable of reading the information and is familiar with the terminology
of the subject matter.
In-person Communication
Improving in-person communication is inexpensive and can be very effective. It requires
training providers about how best to communicate with individuals who are blind or partially
sighted. Simple techniques such as verbalizing directions, orienting patients to exam rooms, and
explaining procedures before performing them greatly enhance communication.
Additionally, simple structural modifications can afford effective communication. For instance,
providing adequate natural light in addition to strategically placed, fixed electrical lights can
increase some individuals' ability to navigate their environment. Generally, surfaces that are
highly reflective or that generate a lot of glare can create barriers to effective communication.
These may include highly polished floors, large expanses of glass, and laminated or glossy
posters. Adjustable blinds may help control glare from large windows. To minimize glare,
overhead lighting should be recessed and light sources should not shine directly into the eyes.
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COGNITIVE DISABILITIES
Individuals with learning disabilities, such as Aspergers and Autism, and individuals with
intellectual disabilities, such as mental retardation, often receive inadequate health care. Such
care includes fewer routine health examinations and immunizations, less mental health care, and
less prophylactic and oral health care, than other Americans for several reasons. One reason is
related to this population's communication difficulties. Unfortunately, there is also evidence that
some providers do less thorough exams, leading to reduced eye exams, dental care, reproductive
care, and other important diagnostic care. Individuals with cognitive disabilities may have a
wide range of communication deficits: some may have difficulty understanding spoken
language; some are non-verbal; and some may use a small number of words, signs, or
augmentative communication systems, such as pictures or assistive devices.4 The inability to
effectively communicate one's symptoms makes recognition, diagnosis, and treatment
challenging, but there are things providers can do, as described below, to ensure that they are
providing the best possible care.
Survey Results
Like individuals with hearing and vision disabilities, individuals with cognitive disabilities may
require auxiliary aids and services to ensure effective communication. These aids may include
visual aids, such as pictures and models, slow and clear speech, plain language, longer
appointment times, and reading materials. Survey results indicate that in reality only a small
percentage of individuals with cognitive disabilities are receiving these aids or services. For
instance, of survey participants with cognitive disabilities, 6% of providers offer visual aids, 16%
use slow, clear speech, 16% use plain language, 21% provide longer appointments to the patient,
and 11% provide reading materials or hand-outs.
In many circumstances, providers make little or no effort to communicate with the patient. For
instance, 41% of individuals with learning disabilities reported that their providers
communicated directly with them, as opposed to someone else in the room, while 36% of
individuals with cognitive disabilities reported that their providers communicated directly with
them.
Providing Effective Communication
Providing effective communication can be accomplished through a variety of inexpensive means.
For instance, visual aids, such as pictures or models, can be used to explain medical procedures
or diagnoses and brochures or other written materials can be extremely useful for individuals
who lack memory capacity or have other conditions affecting their cognitive capabilities.
Additionally, in person-communication can be improved by taking time to assure clear
understanding of the patient and giving the patient time to put thoughts into words. Also, using
precise language incorporating simple words contributes to a patient's comprehension.
4 Report of the Surgeon General's Conference on Health Disparities and Mental Retardation, Closing the Gap: A
National Blueprint to Improve the Health of Persons with Mental Retardation, (2002).
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V. SURVEY RESULTS & RECOMMENDATIONS:
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Promising Practices
Kaiser Permanente implemented a multi-pronged plan for improving communication with
individuals with disabilities. The plan addressed the following areas: (1) provider training; (2)
provision of auxiliary aids, including assistive listening devices, alternative formats, and
interpreters; and (3) website access.
Training
Kaiser collaborated with community organizations to create training programs intended to
heighten awareness and sensitivity among health care staff caring for individuals with
communication disabilities (training for physicians is currently in development). The training
provides basic concepts and skills necessary to work effectively with individuals with
communication disabilities and includes both a live session and accompanying provider
handbook(s).
Each live training session focused on communicating with individuals with specific disabilities.
For instance, the "Listening Closely" training provided information about the following subject
areas:
¦          Differences between individuals who are deaf and hard-of-hearing;
¦          How to identify a patient who is hard-of-hearing;
¦          Guidelines for communicating with individuals who are deaf or hard-of-hearing;
and
¦          Kinds of assistive technology that afford effective communication and who most
benefits from various forms of assistive technology.
Training sessions were available in various formats, including inservices, brown bag luncheons,
and workshops; however, trainings mostly took place through stand-and-deliver sessions with
two presenters.
Kaiser developed a "Training Manual" to use in connection with the trainings. The Training
Manual specifically covered issues such as basic demographics, attitudes, concerns, and barriers
confronted by individuals with communication disabilities; methods for communicating more
effectively with individuals with disabilities; and explanations of types of assistive technology
that enhance communication and instructions for how to use such technology. The manual also
summarizes the model policies Kaiser developed to ensure access for members with disabilities.
In addition, Kaiser's Institute on Culturally Competent Care developed a Provider's Handbook,
which is distributed to providers as part of Kaiser's on-going diversity initiative. The Provider's
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