Developmentally disabled? I first encountered the term at a job fair, most likely at York College, where I had gone in search of employment that could run alongside my coursework. At a booth advertising openings in day habilitation and residential services, I asked about the role. The representative responded with immediate certainty that it would not be of interest to me. I pressed anyway. She offered a direct account of the work, and she was correct. I was not prepared for it. The exchange remained with me.
Several years later, another opportunity surfaced. It did not align with what I wanted to do or the careers I was pursuing at the time, and I had no real interest in the role. I pursued the interview anyway out of a sense of obligation to myself. If I did not secure the position I actually wanted, I did not want to carry the sense that I had passed on work I could have done in the meantime.
The process began with a Human Resources representative named Virginia, who remains one of the more memorable individuals I have encountered. The interview that followed was with a supervisor who was welcoming yet deliberate. Her concern extended beyond whether I could perform the basic functions of the role. She sought to determine whether I understood what the work required in practice. She expressed a favorable impression while making it clear that many individuals enter this field without grasping what sustained commitment entails. In retrospect, it functioned as a screening mechanism against the high turnover that characterizes much of the sector.
From those beginnings, I have held multiple roles, including records management, assistant behavioral support, and assistant supervisor in day habilitation. Each position contributed to a more grounded understanding of how these programs operate in practice. That understanding was tested during an Office of the Medicaid Inspector General (OMIG)* audit conducted while the program was closed due to COVID. I prepared documentation independently for over fifty individuals.
While this may appear to be a form of self-affirmation, the intent is to establish the level of experience informing the perspective presented here.
Over time, I have come to identify what I believe are the issues that must be addressed in order for those receiving services to experience the level of care that is expected.
THE CLIENTS
At one point, those receiving services were referred to as clients. This was later revised in favor of the term individual, reflecting an effort to emphasize personhood. At present, the designation people we serve (PWS) is used. The starting point must remain that these are human beings, and as such, they are entitled to a standard of care consistent with that recognition.
PWS are situated within an approach commonly referred to as person-centered. Within the New York Office of People with Developmental Disabilities (OPWDD), the state agency responsible for coordinating services for individuals with developmental disabilities, a person-centered framework organizes service delivery around the individual’s goals, needs, strengths, and articulated preferences.
This model resists institutional paternalism by positioning the individual as the central decision-maker, with planning structured to support informed choice in both service utilization and the construction of their plan for their life. PWS aren’t children and employees aren’t their parents.
I entered the agency at a time when wages were notably low. During those early years, staff spent considerable time writing and contacting representatives to advocate for funding, as programs faced the possibility of closure. This raised broader questions regarding the extent of the state’s commitment to such a large population and whether continued participation in the field was sustainable.
At that stage of my life, without the responsibilities of marriage or children, I was able to manage despite recognizing that the compensation was inadequate. Over time, and with subsequent promotions, I have seen wages increase. Even so, within the economic conditions of New York, an initial disadvantage is not easily corrected, particularly when the cost of living rises at a pace that outstrips wage growth.
WAGE STAGNATION
Over the years, staff have consistently raised concerns regarding inadequate compensation. Questions surrounding potential raises remain frequent. These concerns are further intensified when workers become aware of wage increases at other agencies while remaining at the same level. Although agencies do not control the authorization of raises*, they are nonetheless affected by the resulting inconsistencies in staffing and, by extension, the quality of care provided.
When these concerns are brought to administration, they are often met with responses that reflect dismissal rather than engagement, as though the grievances of staff lack legitimacy. Dialogue is frequently limited, at times to the extent that asserting a position requires confrontation rather than structured discussion. This dynamic reflects a broader institutional posture in which employee well-being is treated as secondary, even as the organization continues to expect loyalty and adherence to its expectations.
WHO DOES THE WORK?
As noted earlier, the field is characterized by high turnover and appears to operate with an acceptance of this condition, as the factors that would encourage retention are not treated as a priority. The result is an environment populated, at times, by individuals who are not well suited for the demands of the role. Some encounter situations that lead to termination, while others continue to operate with minimal engagement, maintaining a level of performance just sufficient to avoid scrutiny.
Under such conditions, the consequences are predictable. The quality of care experienced by PWS is diminished, while the morale and psychological endurance of those performing their responsibilities effectively are eroded.
Workers who are not adequately engaged often resist even the basic expectations of the role unless placed under consistent oversight. They may approach their responsibilities in a manner that centers their own preferences rather than the needs of those they serve. This posture is reinforced by limited enforcement from administrators, who may be concerned about further destabilizing an already fragile workforce.
WHY THEY STAY
Compensation that aligns with the cost of living would place agencies in a position to exercise greater selectivity in hiring. It is important, however, not to reduce the workforce to its weakest elements. Many capable individuals have contributed meaningfully within these settings and have departed for a range of reasons, one of the most consistent being the misalignment between compensation and the demands of the field.
Those who remain do so under varied conditions. Some have not secured alternative opportunities, others have become settled within their roles, and some have advanced through promotion. Yet this does not capture the full reality. A significant portion of the workforce sustains itself through extended hours within their agencies or through additional employment elsewhere.
NOTES
- OMIG oversees Medicaid compliance in New York State. An audit entails a detailed review of an agency’s documentation and billing practices, verifying that services billed to Medicaid were provided, that documentation meets required standards, and that life plans, progress notes, and service records are accurate and properly maintained.
- I was surprised to see Andrew Cuomo reemerge in the context of the New York City mayoral elections. His tenure was widely regarded within the field as deeply detrimental. He presided over a period in which wage stagnation became entrenched. Kathy Hochul has taken steps to address it through Cost-of-Living Adjustments for human service workers, alongside a more explicit acknowledgment of workforce strain in the form of staffing shortages, burnout, and competition with higher-paying sectors, yet these efforts continue to operate within a system that constrains meaningful change, leaving chronic underfunding as a defining condition.