Volume 9 ► Issue 2 ► 2020
Recognizing Limited English Proficiency within the Disability Community
Amy Mathewson Millar
Individuals with limited English proficiencies (LEP) face significant barriers within the disability community, concerning equal recognition of needs and access to services and support at alarming rates, in contrast to English proficient individuals.
The current areas of need to remedy this long-standing gap, that violates the Americans with Disabilities Act, are found in building trust, improving access to professionally trained interpreters/translators, and addressing systemic bias to prompt
micro-progressions towards universal change, ensuring that all limited English proficient individuals with disabilities have equal access to services and supports in their everyday lives.
Individuals with limited English proficiency (LEP) face significant barriers and are often forgotten within the disability community as it relates to gaining equal recognition of needs, access to services, resources, and support at far greater instances
than those that are English-speaking. A Philadelphia Latnix Advocate and primary caregiver to children with disabilities, “M”, shared one of her own horrifying experiences when she was at her child’s medical appointment:
The staff had left her door open and
she was able to hear the conversation in the next room. A woman was there for
her child and had brought a family member to interpret for her. M was not
trying to listen but realized right away what the doctor was saying was not
what the interpreter was relaying. The child was in dire need of
hospitalization for a serious medical need and they should, under no
circumstances, go home. The family member incorrectly translated that it was
serious, but she didn’t know all the words he was saying and thought she heard
they could go home. M alerted staff who didn’t have any available professional
interpreters, so they brought M into the family’s room where it was learned
that the family member had LEP herself and lacked the understanding to properly
interpret, even though she was only trying to help.
This situation could have resulted in serious complications or death for the child due to the mere lack of a professional and well-trained interpreter, not to mention that this instance was a violation of the Americans with Disabilities Act (ADA) and
the Health Insurance Portability and Accountability Act of 1996 (HIPAA). This scenario happens more often within the disability and global community than anyone would care to admit, which could be remedied by recognizing the needs of those with LEP
and improving access to professionally trained communication specialists, translators, and interpreters. According to the United States Department of Health and Human Services, “If English is not your primary language and you have difficulty communicating
effectively in English, you may need an interpreter or document translation in
order to have meaningful access to programs funded by the Department of Health
and Human Services (HHS). Title VI of the Civil Rights Act of 1964 requires recipients of Federal
financial assistance to take reasonable steps to make their programs, services,
and activities accessible by eligible persons with limited English proficiency. 1”
The Americans with Disabilities Act (ADA) did propel advocacy efforts for individuals with disabilities and their families. Maureen Devaney and Audrey (Dee) Coccia were two leading forces at that time and went on to create Vision for Equality (VFE), a
grassroots 501(c)(3), in 1996 to address the growing needs of families of individuals with disabilities who often are caregivers for their loved ones. VFE has long differentiated itself from other advocacy organizations with its unique “for families,
by families'' approach. VFE’s staff and volunteers consist of people with disabilities, including those with LEP, and family caregivers providing a fidelity that system-based approaches lack. VFE has worked tirelessly as a unique organization dedicated
to people with intellectual disabilities and autism in Philadelphia and throughout the state of Pennsylvania. Each year, VFE provides training to teach thousands of people with intellectual disabilities and autism and their families about services,
supports, current laws, and best practices so that they can become their own advocates and, in turn, assist others.
It was clear to VFE over the years that for families with LEP, more needed to be done, even now as the 30th anniversary of the ADA was celebrated in July of 2020. Navigating the disability system is challenging and daunting for all families.
Yet, little is done to bridge the gap for those that wait for services, especially for those with LEP.
VFE has always supported the advancement of assistive technology for communication for all people; however, in 2004, VFE began their outreach to the families that shared an intersectionality of disability and LEP within the Latino community. Latino Services
of Vision for Equality, Inc. advances information, advocacy, training, and resources to ensure that the Hispanic community has the knowledge and tools needed to make well-informed choices to improve their quality of life across Pennsylvania.2 While VFE has been a leader in providing accurate and valuable information to individuals with disabilities and their families for many years, Latino Services works to provide the same access to training and technical assistance for the Spanish-speaking
community. This work has enabled many families with LEP to enhance their abilities and close the cultural gap so that they have a better opportunity to connect with needed programs, services, and providers.
Vision for Equality’s co-executives have worked to create systemic and generic social change for all individuals and their families within the disability community, to have the support they needed at the time that they needed them to flourish in their
lives. Some of their first experiences reaching families with LEP came from the closure of a Philadelphia Latino-focused provider in the early 2000s, leaving a number of people being cared for in group home settings where both the individual and their
family had LEP with no real support or options. It was challenging to interface, support, and understand the unique needs of the individuals and families. VFE had previously formed the Philadelphia Parent Support Groups through their partnership with
Philadelphia County’s office of Intellectual disAbility Services. As caregivers themselves, they were moved by the level of need these families had, which led to the creation of the Latino Parent Group. Their approaches naturally brought families
to VFE’s doorstep that were desperate and facing lack of access to state systems, policy makers, and supports due to LEP. It became clear that there was a need to have a dedicated department to serve the Latino Community and their work continues today.
Dee Coccia, at nearly every meeting she attends for decades, asks the same question, “What are we doing to reach those with LEP and cultural
barriers?” Often there is silence or the standard response, “If we get a
request for materials or an interpreter in another language, we will honor it.”
Which begs to question: how would one make that request if that organization, system, or agency’s website, materials, and offices are geared to or produced solely in English?
experience as a Latino parent of children with ID is that when a professional
wrongly assumes that I have the knowledge and awareness of language and
terminology used in the ID system, especially the acronyms. I don’t expect all
resources to be translated, but with today’s technology at least have it on the
organization’s website. Professional translators, with no ties to the family or
the organization, are needed so that they can remain neutral at meetings
(schools, hospitals, etc.). I feel uncomfortable bringing a friend or family
member or having someone else from the organization translate; a
third-party translator would be more professional. I like to keep family
business private and there were a few events when the person translating needed
more help than me because they lacked the professional training in translation
or the disability community.”
A pivotal moment in this movement came when a member of Vision’s Latino Services Department approached the then Deputy Secretary of the Office of Developmental Programs at a largely attended statewide meeting. She handed the Deputy Secretary a document
and she asked, in front of all attendees, that he read it and use it in the meeting. He replied, “I cannot read this, it is all in Spanish.” She explained, “Exactly. This is how I feel when you present the meeting materials to me.” This brought recognition
to the critical need to do more and made way for the Latino Services and family group to be recognized and supported by policy makers both in solidarity and fiscally. It has been more than a decade since that meeting, and while there have been many
strides to date, many statewide materials, websites, and offices are still solely geared exclusively to those with English proficiency, discriminating against those with LEP.
Current Areas of Need
Working around this topic of recognizing those with LEP, several individuals were asked to share their personal and professional experiences in a virtual round table discussion in June of 2020. When addressing how to improve the reach, recognition, and
support of those with LEP, there were three clear themes from their perspective: trust, lack of access
to professional and knowledgeable translators and interpreters, and systemic
bias. It was clear that there was a vast need for more micro-progressive movement by all members of the disability community, from self-advocates to top policy makers, to address these needs and move toward a more equitable disability community for
all people that have intersectionality with LEP and disability. This is not limited to the Latino, HOH, Deaf, or Blind communities but includes all communities with LEP.
The Merriam-Webster dictionary defines trust as, “assured reliance on the character, ability, strength, or truth of
someone or something or one in which confidence is placed, or dependence on
something future or contingent: hope.3” For those with LEP, trust is and always will be at the forefront. They must fully trust the person interpreting and the accuracy of translations. They must also trust the agency, county,
or organization to provide what was promised. Often agencies wonder why participation from LEP families is low for their events; lack of trust is often the issue. It must be earned and built. It is also why “For Families, By Families” and “Nothing
About Me, Without Me” approaches are best in reaching disparate groups of people, including those with LEP.
VFE built that trust among the Latino community over time by employing and empowering family members that were caregivers with LEP who faced barriers themselves and who were eager to assist others within their community while actively listening to families’
needs. They were authentically supported with training and education. They recognized the need for more simultaneous interpretations, as often LEP individuals are asked to attend events in a separate room or location all together, highlighting that
they did not have equal access.
State policy makers wanted to hear from the Latino community and a large event was to be held with interpreters through VFE, but policy makers would have required the gathering of the names and contact information for all those in attendance, in order
to allow the event to take place. VFE advocated that these families, many of whom were undocumented or facing immigration challenges, would not attend if required to sign-in or provide their information as required by the state, and they won. The
event was held in Philadelphia and drew a crowd of over 1,000 people, all eager to learn how to navigate the disability system and find support for their loved ones with disabilities. It was the first large, inclusive gathering of Spanish-speaking
families in the state around disability services. Had it not been for VFE’s advocacy, a sign-in sheet would have prevented this valuable event.
Trust must first be built in order to reach those with LEP. Respecting culture is also important; often we expect others to fit into our culture rather than taking the time to understand their unique needs. This takes time, effort, and utilizing representatives
that embody and identify with that culture. The need for diverse approaches and efforts for individual and family groups must be rooted in the trust built between systems-related organizations and those they wish to support by utilizing the individuals
with LEP as leaders for all efforts.
Access to professional interpreters
Many of the examples shared from the round table focused on the need for true access to professional, well-versed translators and interpreters that also have experience and understand the disability community including medical terminology, understanding
of services and procedures, and access to resources for effective interpretation and translation. As of June 2020, there are currently a staggering 7,099 spoken languages in the world; in the United States, there are 347 spoken languages.4 The barriers in locating a trained professional are compounded by costs, scheduling constraints, and an underutilization of available technology. Often, the provision of mandated auxiliary aids under the ADA is not provided by organizations, even
when requested, due to lack of known professionals with the appropriate knowledge base coupled with the fiscal impact. Furthermore, there is deep-rooted bias that this need is unnecessary, excessive, and burdensome when, in fact, it is an inherent
right under the ADA. Many LEP families are either left out or rely on neighbors, family members, or friends to act as their interpreter. Yet this requires them to have those relationships in the first place, as well as the needed trust. When accessing
needed disability services, medical care, and supports; not having a professional interpreter or translation can also violate HIPAA and put the individual at risk.
As mentioned, M, is a Latinx family caregiver, translator, and interpreter. To her, the biggest problem, fueled by a lack of professional interpreters and translators, is the isolation experienced by those with LEP. In seeking assistance, often individuals
or families don’t understand what the professional entity is trying to communicate, contributing to a lot of misunderstanding, isolation, and frustration. They must often rely on friends or family members as interpreters and, in doing so, lose some
of the information because the person who is interpreting or translating does not understand a term or acronym. In addition, many agencies do not have the necessary information in varied languages, further isolating individuals and families with LEP.
From her experience, many individuals use Google to translate documents which, while helpful, is not always accurate or understandable.
Many times, the information is not family-friendly, with too many confusing terms. Even if the translation is done at a professional level, if the individual or family has limited understanding of disability-related terms, it too can be lost in translation.
Terms and acronyms can be complex and difficult to translate. M herself works with a diverse team when doing translations, several of whom speak a varied dialect of Spanish, and will often consult with outside resources to ensure that the translation
is done properly. This lengthier process ensures that the translation is at a superior level and accessible for individuals who may also have communication or intellectual disabilities in addition to LEP.
In languages that have various dialects, there are many homonyms that are written and spoken the same but have different meanings. For example, in Spanish, “mañana” can mean both tomorrow and morning. In Korean, 배 [be](bae) can mean ship, stomach, or
5 If an organization utilizes a word incorrectly, this could create confusion. Agencies that want to address the needs of LEP communities must have information in diverse languages that are also easy to understand. Additionally,
agencies must work toward having a more diverse staff that understand unique cultural needs, so they can build relationships and capacity, and ensure access to professional interpreters and translators.
Timely access to information is critical for all people, but especially for those with LEP and disabilities. The COVID-19 pandemic demonstrated the lack of timely translated materials, professional medically versed interpreters, and diverse delivery of
information, putting lives at risk. The need for translations should not solely be produced upon request, especially in a crisis, but rather equal access to information for all people must always be a shared responsibility.
My belief is that bias is innately rooted in preconceived notions that have no factual foundation and are formed by a lack of ability to adjust one’s “cultural lens” through which they view a person, scenario or concept. Bias has impacted the disability
community long before the ADA, and long after as well. There is a systemic learned, ableist bias for those with disabilities. Those with LEP do not suffer simply because of their LEP; they suffer because of systemic bias that creates barriers based
on the idea that bridging the gap to meet their need is too complex, would require substantial strain, and would force organizations to address learned ableism and bias.
“B”, a well-respected Latino advisor based in Harrisburg, Pennsylvania shared that while she does have knowledge of system-based terminology and has English proficiencies today, her accent creates stigma and barriers that come from a place of bias that
she must not understand English, or lacks intelligence or expertise. She recalled a time in her career where she was promoted but her coworker did not celebrate with her. Rather, the co-worker expressed, “There is no way I am working under a dumb
Mexican. She can’t even speak English!” Her accent brought out deep-rooted bias that ignored her training, skill, knowledge, and experience. In comparison, “N”, a Philadelphia-based professional in the disability community, has no noticeable accent
from her country of origin, yet has experienced similar bias in reverse. She is too “Americanized” to be someone that understands the needs of her cultural community, even though she has deep connections to her culture, has faced her own barriers,
and is still going through a lengthy immigration process herself. Hard of hearing and Deaf individuals can also experience this interchangeable bias. Additionally, when interpreters are assumed only needed and provided for the formal part of a meeting,
not before or after when many attendees network and converse, it leaves those with LEP out of conversation and connections.
Bias can impact all areas of life including access to care. B shared an experience when her daughter, who has intellectual and medical disabilities, was bitten in the face by a dog and sought care at her local hospital. They placed her in a hallway and
told her they had to wait for the interpreter, while she held her bleeding child in her arms for hours. The staff treated her as though she was a burden, solely because of her LEP at the time. She pleaded for help, but no one understood, and her daughter
waited needlessly for care. A security guard offered her a handkerchief for her daughter’s injury, the only care this hospital provided. She finally called a hospital much further away. When they arrived, the second hospital was ready to treat the
child without barriers, with interpreters and staff that were sensitive to the language and cultural needs of the family. “Hospital shopping,” a term indicating the need to shop around to find competent, proper care that is not clouded in stigma,
bias, or lack of capacity to treat the unique needs of those with disabilities and LEP, is a term very familiar in the disability community, especially among those with LEP. This is particularly problematic in rural areas where there may only be one
provider or hospital.
From an advocates’ perspective, it was clear that systemic bias raised its head front and center during the COVID-19 pandemic for those with LEP significantly beginning with lack of equal and timely access to information.
Care was rationed for those disabilities. Language barriers and the lack of understanding that a support person is not a “visitor” for an individual with a disability or LEP, but rather an essential, life-sustaining, mandated, auxiliary support
resulted in traumatic experiences and life-threatening conditions. Rationing of care and denial of support persons endangered lives even at world renowned facilities. These barriers, rooted in bias, violate the individual’s right under the ADA and
must be remedied as we look for sustainable long-term solutions.
Recognizing the needs of those with LEP within the disability community requires trust, access to professionally trained translators and interpreters, and addressing systemic bias at all levels including material production, technology utilization, service
delivery, and training for individuals, families, and professionals. While this is a large and critical problem, the solution does not have to be a singular, massive change. Rather, it can be found within micro-progressive movement at all levels.
If, at each interface, local providers, counties, community partners, policy makers, and legislators make conscious efforts to create trust, build access to professional, accurate interpretation and translation while addressing systemic bias, the
needs of those with LEP will be recognized and met. Rather than seeing LEP as the barrier, antiquated barriers must be removed. By doing this, the needs of those with LEP will finally be recognized and it will lead to authentically upholding
the ADA and diversity within the disability community for all individuals and families.
1. Health and Human Services. Limited English Proficiency (LEP). December 19, 2019.
https://www.hhs.gov/civil-rights/for-individuals/special-topics/limited-english-proficiency/index.html. Accessed June 30, 2020.
2. Vision for Equality. Latino Services. https://www.visionforequality.org/programs/#prg5. Accessed June 30, 2020.
3. Trust. Merriam-Webster. June 20, 2020. https://www.merriam-webster.com/dictionary/trust. Accessed June 30, 2020.
4. Michaels S. How Many Languages Are There in the World? June 3, 2019. https://www.worldatlas.com/articles/how-many-languages-are-there-in-the-world.html.
Accessed June 30, 2020.
5. Choi M. Same Words with Different Meaning in Korean. October 16, 2018. https://medium.com/story-of-eggbun-education/same-words-with-different-meaning-in-korean-1-fe0be46ed3c3.
Accessed June 30, 2020
Mathewson Millar is a well-respected Disability Self-Advocate, primary
caregiver to three children with medical needs and disabilities, and in
addition to her role at Vision for Equality, is a member of the Pennsylvania
Developmental Disabilities Council. She is a nationally and statewide
recognized keynote speaker, facilitator, and trainer on a variety of platforms
around disability and supporting families since 2010. Addressing stigma and
honoring intersectionality within the lived disability experience are the focal
points of her personal and professional work and advocacy.
Organization: Vision for Equality
for Equality (VFE) is a grassroots 501(c)(3) non-profit organization founded
almost 25 years ago to address the growing needs of families of individuals
with disabilities who often are the primary caregivers for their loved
ones. VFE has long differentiated itself
from other advocacy organizations with its unique, “For Families, by Families”
approach that systematic approaches lack. VFE has worked tirelessly as a unique
organization dedicated to people with Intellectual Disabilities and Autism in
Philadelphia and throughout the state of Pennsylvania.
718 Arch Street, 6N Philadelphia, PA