I’ve been in a Zoom writing workshop with some wonderful women since 2021. It’s a rare writing group that not only makes you a better writer, but also a more confident one. (In no small part due to our brilliant facilitator,
, who you can find over at .)Here’s piece of feedback I get nearly every time (along with, “I noticed you have four run-ons in a row”): “I know xyz about you because I know you. But not everybody knows you.”
What a gift to be seen and known by a community of incredible writers! And what a gift that someone who doesn’t know me in real life might read this!
So, in the spirit of the irresistible urge toward the Oxford English Dictionary in the introductory paragraph of half my English papers in college, let’s jump in. Remember that the definitions below, while they may have in part come from official sources, are mine. Any mistakes you find are my mistakes—and I would love to hear your feedback.
This post will be updated routinely as more terms become useful to define. It will live in its own tab on my Substack landing page. As such, the email itself will have a voice over, but the enduring post will not.
L’Arche
…is a community of people with and without intellectual and developmental disabilities, sharing life together. I use L’Arche to refer to my specific community, made up of four homes in the DC area. (I work in two of them.) But L’Arche is part of an international federation of over 150 communities, which are as varied as the people who are a part of them. In my community, L’Arche also refers to the nonprofit that funds at least one third of the operating costs of our Medicaid-funded group homes—more on that later.
My L’Arche community’s mission statement is as follows:
Make known the gifts of people with intellectual disabilities, revealed through mutually transforming relationships.
Foster an environment in community that responds to the changing needs of our members, while being faithful to the core values of our founding story.
Engage in our diverse cultures, working together toward a more human society.
L’Arche was co-founded by a person who, after his death, was revealed to have abused people like me. Our communities learned about this abuse mere weeks before the Covid-19 pandemic, and literal days after I accepted my role as an assistant in the community in 2020. I have some feelings about that:
Assistant
…is L’Arche’s word for Direct Support Professionals (DSPs), or Direct Care Providers—folks who support people with disabilities with their daily life activities. Daily life activities include anything that’s a part of our lives, day to day: personal care, meals, transportation, taking medications, finances, going to doctor’s appointments, traveling, planning, cleaning, seeing friends, working on goals, searching for missing socks in the laundry and pieces of egg shells in the breakfast pan. People have different levels of need in each of these areas, and assistants are extensively trained to meet these needs. In the homes where I work, usually there is one assistant working with four core members at any given time.
Part of what makes L’Arche’s model unique is that many assistants live in the homes with core members. I did, for almost two years, before I accepted a role as the Service Team Leader, which does direct care while also managing and supervising the assistant team. As a full time assistant at L’Arche, I was paid (although some folks do this work as volunteers). I had a supervisor, a schedule, health insurance, all that jazz. It was a job! I just also had breakfast at the same table as the people who, later that day, I’d be supporting professionally.
Direct support professionals around the world continue to advocate for our work to be valued, protected, and resourced. Learn more here, and keep reading to see me try and fail not to hop on a soapbox about it.
Core members
…are the center of L’Arche communities. Core members are the folks with intellectual or developmental disabilities who live in and receive Medicaid-funded services at L’Arche. In other settings, core members may be referred to as “residents,” “participants,” or “individuals,” and all of the language in this field evolved and continues to evolve from the deinstitutionalization movement.
You may hear me call us “assistant family members” or “core family members.” L’Arche has gone back and forth for years around words that refer to each other as family. All of us come from biological families, whether or not we are still connected to them. Referring to unrelated people as families may negate for some people the nature of our relationships at L’Arche, which are unique because we love each other and are not related. At the same time, calling one another family is a way to honor not only the fact that many of us do not have strong connections to our biological families—whether we are separated by geography, ableism, death, poverty, or choice—but also that the love we share for one another as a chosen family is as life-sustaining and foundational as that we may share with our biological families. It is an act of power and reclamation for people to chose whom they identify as family.
Charles, proud L’Arche core family member whom I supported for nearly two years, coined the terms “core family member” and “assistant family member.” L’Arche GWDC uses them in his honor, and in recognition that he modeled for us how to live as brothers and sisters. I hear his voice saying it when I write it. And I remain honored and humbled to be his sister.
Here’s a little slice of life in my family:
Intellectual and/or developmental disabilities (I/DD)
…refers to conditions that originate early in life and that impair one or more major life functions. Not all developmental disabilities are intellectual, and not all intellectual disabilities are developmental, but I/DD is a catch-all term. Some conditions you may have heard of that live within this definition: Down Syndrome, Cerebral Palsy, Fragile X Syndrome, Prader-Willi Syndrome, and Autism Spectrum disorders (ASDs).
But just as someone with Down Syndrome experiences life differently than someone with Cerebral Palsy, there is infinite variation within the I/DD community. It’s almost never accurate to say, “All people with disabilities need/want/feel/experience…” just like it’s never accurate to say “All people of color…” “All women…” or “All queer people…” etc.
And it's worth noting that like all intersectional identities, people with disabilities exist on a spectrum of privilege in their lived experience. Someone who uses a wheelchair experiences more barriers to access than someone who doesn’t. Someone who can speak fluently in the language of their culture experiences fewer barriers than someone who speaks, or signs, outside of our cultural norms. More often than not, ableism and structural barriers play a role in determining to what degree each of us is able to participate in our world; my siblings at L’Arche continue to teach me daily how to disrupt and dismantle these interlocking systems of oppression.
Medicaid waiver services (specifically Home and Community-Based Services, or HCBS)
…are, phew, complicated. And different state-to-state. But stay with me.
Essentially, core members at L’Arche and many other folks in my state (Virginia) qualify for Medicaid under non-typical conditions. (Therefore, the conditions are waived for them.) We work under this one:
Section 1915(c) waivers: Home and Community-Based Services (HCBS) waivers are designed to allow states to provide home and community-based services to people in need of long-term care. This means they can stay in their own home or a community setting (such as a relative’s home or a supported living community) instead of going into a nursing facility.
The state funds the care of the core members I work with by reimbursing L’Arche for its employees’ pay. That’s why it is part of our job as assistants to collect data about the care we give; our outside partners look to see if we are doing what we said we would do: taking care of each other.
This allows core members to live in their community, rather than a nursing home, without having to pay for private care. (Worth noting: core members I support range in age from mid-thirties to mid-sixties. Most people of those ages do not living in nursing homes!) L’Arche core members do not pay for the care they receive—they do pay living expenses proportional to their income from work or social security.
The waiting lists for medicaid waiver services are astronomical. This means tens of thousands of Americans do not have access to the care they deserve. I highly recommend the documentary below for more information and routes to advocacy:
Meanwhile, the current reimbursement rate for Medicaid services in Virginia is $12.50/hour, which is nowhere near a livable wage anywhere in the state. Low pay, limited benefits, and a pandemic that ravaged caregivers all contributed to an intense DSP shortage. We often say in this work that we as DSPs have tremendous power to make the lives of people we support wonderful or terrible. Would you want to receive daily care from someone who can’t pay for groceries, childcare, or rent themselves?
L’Arche GWDC, and many other communities in the international L’Arche federation, are non-profits for this reason: so that assistants can receive pay and benefits appropriate to the work we do. And, so that our house budgets can include things that make life meaningful: vacations! Meals out together! Gas in our vans! Printers that work! Christmas lights for our porch! Birthday parties! Campfires! Waterslides! Gardens! Rollercoasters and fried oreos! Pens! (I am always ordering pens.)
Also! In the state of Virginia, people who receive HCBS services have an asset limit of $2,000. In 2024. There are trusts and other limited ways of building wealth available, but in our lived reality, we are often supporting people with spending down so that they continue to qualify for the services they require to survive. $2000! In 2024! Read more here.
The deinstitutionalization movement
…refers, in the United States, to policies that people with disabilities have shaped which encourage the movement of folks with disabilities out of long-term institutional settings like state hospitals and asylums, back into communities with families or group homes. In general, this has meant a substantial improvement for the human rights, dignity, and wellbeing for members of our communities. Hearing about abuses that took place in institutions can be exceptionally difficult; I’d encourage you to make space for this documentary if you want to learn more about what folks in my specific (DC-area) world lived through within an institution called Forest Haven:
I find it incredibly helpful to hear from folks with disabilities, especially those that have lived through deinstitutionalization, about their own advocacy. Here is a video of folks in Connecticut reading their bill of rights:
And here is an oral history of couple who met at Forest Haven and who I was lucky to hear speak in 2021:
(There are more oral histories through the project above that I’d recommend taking a look at!)
The ways that state and country-level partners have responded to and prevented future abuses such as these are varied. Sometimes this manifests in ways that seem at odds for our life as a family; for example, we have very specific rules about how we give and document medication administration. This is part of the goal, ultimately, to keep each other safe, healthy, cared for, and empowered.
HIPAA
…refers to the Health Insurance Portability and Accountability Act of 1996 which set the standards for use and disclosure of Protected Health Information (PHI). Guess what? You already have some of my Protected Health Information: my first and last name. Also PHI? Date of birth, address, phone number, social security number, diagnoses, and more. HIPAA is a daily part of our life at L’Arche as a healthcare agency because part of our responsibility is protecting the health information and privacy of people who receive services at L’Arche.
Because no core family members have signed a release of information or likeness to me, Liddy Grantland, writer of very long explanations, I will not use people’s names or photos in content that I create. (The exception is Charles, whose name and likeness became public by his own choosing after his death.) L’Arche might use names and photos, and I might link to it (did you see me try not to laugh in that video?) but that’s because people did sign waivers. I will likely talk more about this another time—but if you have questions or feedback, you know where to find me.
What did I miss? What did you learn? Where did I lose you? I’d love to know.
Thank you for reading and learning with me, sweet friends.
All my love,
Liddy