COVID-19 has had devastating consequences to people and communities: tragedy at its worst; consequences beyond measure; and anxiety and uncertainty exceeding our grasp.
The purpose of this article is to highlight the challenges that providers of care for persons with intellectual and developmental disabilities have faced since onset of this horrible virus. They have had to use a “do it yourself” method without the direct support of government like find and buy PPE and medical supplies; close programs; provide staff incentives; follow CDC and state guidelines on quarantine and isolation; and negotiate with hospitals for access. The issues continue to mount like the lack of priority for testing staff and persons being served and the unreimbursed expenses related to managing the crisis.
Arthur Y. Webb
The most tragic outcome of this crisis is the high rate of infections, hospitalizations and deaths for people living in licensed residential settings in New York City like group homes and including staff. The early data on infection and death rates showed that persons with intellectual and developmental disabilities had 3-5 times the rates in New York City residential group homes compared to general population rates.
One of the more profound impacts of the COVID-19 crisis is that leaders in the nonprofit, human service world are living with competing priorities and moral dilemmas all day long. Some of these competing priorities can bang against each other in harsh ways but then require immediate resolution and action. Sometimes these are diametrically opposing priorities.
Why is this relevant to the crisis caused by COVID-19 for both the public health and economic crises? The challenge has been dealing with competing values and strategies even in the face of evidence. For example: providers want to protect the clients at all cost even though it might undermine the fiscal viability of the agency; they insist that staff come to work even though they have not been tested; and insist on staff coming to work even though they have family obligations due to the crisis. There are many other conundrums that executives have faced during this crisis.
For persons with intellectual and developmental disabilities (IDD) including those with mental retardation, cerebral palsy, Down Syndrome, epilepsy, neurological impairment, and autism are being directly impacted by COVID-19. The very thing that is a hallmark of the IDD field – integrated community living – is now creating an additional vulnerability in being exposed to COVID-19 – living in a group home.
New York Integrated Network for Persons with Intellectual and Developmental Disabilities (NYIN) is a 501(c)3 nonprofit organization which formed a data collaborative project headed and facilitated by one of the member CEOs over a year ago. Its purpose was to build a database on the activities of the members since the state Office for Persons with Developmental Disabilities (OPWDD) was not producing information to measure quality, costs, or outcomes. However, the data collaborative started to focus on collecting data on COVID-19 in early February. Once again, the state was not doing this in any meaningful way. The Collaborative expanded it participants to include two other larger agencies in NYC (see below). Our goal was to track rates of infection, hospitalizations, and deaths. This was designed to help track trend lines, identify hotspots and advocate for priority attention from public officials. The data was a subject of an article in Crain’s Health Pulse in early April.
This Collaborative is collecting data on over 4,000 persons living in licensed group homes in NYC or over 30% of all residential settings in NYC.
One would think that data gathering is a neutral activity but as a Collaborative, we have learned that data can get public officials, advocates, staff, and families all upset and concerned. The issues start with questioning the data gathering methodology, and then moves to using it to criticize the field. This is a no-win proposition even though providers are doing everything to protect the staff and the persons they serve.
I actually believe that leaders learn to hold two contradictory ideas, values, and priorities at the same time and still effectively lead. In psychology, they call this cognitive dissonance, which can and does create mental stress and discomfort. We constantly look for evidence, best practices and lessons learned to reconcile this dissonance. We also see, what sometimes is called cognitive immunization, where even in the face of overwhelming evidence we hold on to certain beliefs.
Cognitive dissonance is not a small or trivial matter facing leaders because it can and does create situations where leaders ignore facts; hold on to beliefs after they have been debunked or considered irrelevant; avoid making tough decisions and avoid conflicts; refuse to change the course of action; fail to listen to competing thoughts; rationalize their actions; and follow the herd because it is easier and is a path of least resistance.
Let us work through some examples for executives in the human services sector where beliefs bang against evidence:
Most executives who are managing agencies heavily dependent on government funding constantly complain about lack of flexibility to use resources or reform program models but when given a chance to reform, they stick with what they know. An example is sticking with a fee-for-service (FFS) model because the whole agency is wrapped around making FFS work versus given the opportunity to take risk under global budgets or managed care to flexibly use finite resources.
Another example is the use of licensed group homes for people with disabilities. There is a strong belief that the essence of community living is having access to group homes of four persons or less. Families, advocates, providers, and government agencies hold on to this model because they believe it works. There is no real evidence that this model is better than independent living or living in non-certified housing in terms of quality of life or well-being. New housing models are slow to enter the policy realm because of these strong beliefs around group homes.
High performing executives and leaders are often good story tellers about themselves or their agency. At a personal and professional level, stories help create a narrative that unifies the disparate pieces of their lives. In order to deal with the reality of cognitive dissonance, leaders weave together a coherent story that gives meaning to their life and role.
All of this has become quite pronounced during the dual crises of dealing with COVID-19 and the economic fallout from revenue loss and expense increases.
Here is an opening line that gives us insight into the world of cognitive dissonance for executives and insight into the crises that could fundamentally change the way organizations operate.
A Tale of Two Cities by Charles Dickens:
It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to Heaven, we were all going direct the other way – in short, the period was so far like the present period, that some of its noisiest authorities insisted on its being received, for good or for evil, in the superlative degree of comparison only.
Crises tend to reveal many things about people and organizations. What I have seen is that executives have stepped up and demonstrated leadership in managing the dual crisis of COVID-19 and its economic fallout. We are fortunate to have these leaders.
Data Collaborative Members are: NYC AHRC, YAI, Access: Supports for Living, ANIBIC, Birch Family Services, CP Unlimited, Westchester Jewish Community Services, Human Care Services for Families & Children, IAHD, LifeSpire, Services for the Underserved, Brooklyn Community Services, The Jewish Board of Family and Children’s Services, HeartShare Human Services of New York
Arthur Y. Webb was the former commissioner of OMRDD (now OPWDD) from 1983 to 1990 and Executive Director of Division of Substance Abuse Services (now OASAS) from 1990 to 1992. Mr. Webb has held several senior executive positions in government and the nonprofit sectors. For the last ten years, he has been a consultant working with numerous nonprofits to translate public policy into innovative solutions. Presently is the Executive Director of the New York Integrated Network for Persons with Intellectual and Developmental Disabilities (a nonprofit collaboration of 12 providers). Contact: arthur@arthurwebbgroup.com or 917-716-8180
