Feature Issue on Engaging Communities Underrepresented in Disability Research

Makom, as it is known today, was founded in 1982. As with organizations like it across the United States, Makom was created by families who were no longer willing to accept the notion that people with intellectual and/or developmental disabilities (IDD) were destined to live in institutional “care.” Rather, the founders of Makom envisioned lives of abundance among their adult children with IDD, right smack-dab in the midst of the communities into which they were born.

In our case, there was a second, critical piece. Makom was founded as Jewish Foundation for Group Homes (JFGH) by a half-dozen or so families who believed not only that their adult children with IDD should live, work, learn, and play in their home communities, but also that those adults with IDD could live their lives Jewishly.

In 1980, the Jewish community in Maryland, Virginia, and Washington, D.C. numbered about 285,000, a not insignificant number, but one that represented slightly less than 3% of the total population in those three jurisdictions. There were organizations supporting people with IDD in and around the region at the time, many doing good work, but virtually none that afforded full expressions of faith, let alone a minority faith community. Today, the Jewish community in the region is more than 446,000 people, and remains about 3 percent of the total population.

In the early days of the organization’s history, the focus was, frankly, on the Jewish community. We weren’t founded or incorporated as a religious organization, but the focus on supporting Jews with IDD particularly had resulted from families from within the Jewish community wanting another option. The organization formed not because other organizations were doing a bad job supporting Jews with IDD, but rather because those other organizations couldn’t know all of the nuance of what that meant.

Makom’s Emma Waller, right, has worked with Patrick Day since 2012.

As one example, every home in which people with IDD received residential supports proudly offered a kosher kitchen. Sparing a fair number of details, this essentially means that only certain foods could be prepared for meals (e.g., no pork or shellfish). For many Jews with IDD for whom the observance of kashrut (Jewish dietary laws) was essential, this would become their only option.

Since its founding 40 years ago, the organization has learned a lot. Now known as Makom, we very proudly remain a (hopefully!) great option for Jews with IDD. We also recognize the privilege and responsibility of supporting people from a host of religious, ethnic, cultural, and other backgrounds. We also are learning how well and, in some cases, how not well we are supporting people whose faith and other traditions are wonderfully varied and diverse. It is usually an affirming, although not infrequently chastening, exercise for us, an organization founded on the premise of supporting a minority community.

In recent years, we have been reminded in stark terms of the fundamental issues of fairness and social justice. The horrible murders of George Floyd, Breonna Taylor, and too many others from communities of color have forced us into a reckoning with institutional bias and barriers that are stubborn and persistent. We’ve witnessed rank anti-Asian sentiment and violence, and we continue to see anti-Latino and anti-immigration sentiment invade our national discourse. And, yes, we see a concerning rise in anti-Semitism as well. These experiences of the last several years have, for Makom, compelled us to rethink our work and our approach.

Makom has recently gone through a “down to the studs” rebrand, including a new, contemporary mission, vision, and values, all of which point uncompromisingly to self-determination. Our mission is to support and empower people to achieve the quality of life to which they aspire. Among four core organizational values is self-determination. We recognize the intrinsic value and dignity of all people and support their right to make their own life decisions. Even our tagline—supporting self-determined lives—speaks to our embrace of our role in delivering supports that, if done well, result in outcomes not only important to the organization, not only important to state and federal systems of care, but outcomes important to the people to whom Makom provides supports. Not especially novel, but not especially common among systems of support, either.

Still another consideration is our commitment to more individualized, less congregate community living. “Group homes,” it’s fair to say, is tired, industry language. In many ways, it’s even a bit of an oxymoron. Few of us live in group homes. We live in family homes, usually with a significant other, often with kids, sometimes into their young adulthood. The average U.S. family household is 3.2 people. And usually, those 3.2 people are related, unlike the typical “group home.” So, we’ve opened extraordinary and rich dialogue with people Makom supports with the question, “How do you want to live?” In just the last two years, houses in which people receive community living supports from Makom have downsized to an average of 2.89 people per home, resulting in no small part from the sometimes surprising (particularly to families!) answers we get to that question.

These disparate but ultimately related considerations place Makom and organizations like it at an inflection point. To whom are we accountable? What do we do if (or, more accurately and inevitably, when) what the person wants is different from what the system is designed to provide? In our case, what if we support a Jew with an IDD for whom kashrut simply isn’t important? How do we approach someone we support whose faith tradition includes them wanting a Christmas tree or spending Christmas Eve in church services? How do we assure that, even if only through the prism of self-direction, we are welcoming to people of all racial, ethnic, and cultural backgrounds? And, there’s this: What have we learned through our own experiences and in keeping with core principles of self-determination about other minority communities?

The list of questions is without end. Just under 80% of the people we support who have disclosed race information identify as white. Nearly 3% identify as Asian, 4.3% are from the Latino community and a bit more than 10% are from the African American/Black community. In Montgomery County, Maryland, where Makom does the bulk of its work, the 2020 U.S. Census put the African American community at 18.1% and the Latino community at 20.5%, however.

From our founding, Makom sought to respond to the needs and aspirations of a minority religious community. We remain among a small handful of community organizations in the United States dedicated, at least in part, to supporting this particular community. And, as we’ve evolved and grown, we’ve also grappled with the juxtaposition of our origins in social justice and a 21st Century, American racial justice landscape; of our meaningful and substantive commitment to self-determination (even when a Jew with IDD cares far less about keeping kosher than we might have imagined 40 years ago) and the realities of evolving demographics in the region.

Through our introspection, we’ve decided that we simply must do more explicit work in reaching and inviting people with IDD from other races, linguistic backgrounds, ethnicities, and cultures. Our systems of care—Home and Community Based Services and the state funding and regulatory systems that implement them—are not, on their own, built to respond uniquely to the needs and aspirations of people with IDD whose world view is colored as much by their racial, ethnic, and cultural experiences as their IDD. We’ve also decided that talking about it or writing articles about it isn’t enough. Proof, meet pudding.

Among a raft of strategic initiatives for Makom is to diversify its board of directors to more closely reflect the community in which we do our work. We are part of a local association of provider organizations analyzing and exchanging demographic data in a targeted outreach to the Latino and Asian communities, which are underrepresented at Makom. We are training our staff and leadership on progressive support ideologies that blend our commitments to self-determination and social justice. We’ve reached back to our origins in assuring the full participation of Jews with IDD in the very communities into which they were born and expanding the same commitment to other underrepresented communities, all while appreciating that these communities are no more homogenous than majority communities. We embrace self-determination as our guiding principle to assure everyone decides their life course and the outcomes toward which they and we, in their service, work.

Through that work, persisting through the inevitable mistakes we’ll make along the way, we will live into our larger goal of becoming Makom, the Hebrew word for place. Not place as a point on a map or physical place in community, but everyone taking their rightful place in the human gestalt. To us, that place is the starting point for self-determined lives of abundance for all.