'A Formula for Disaster': How We're Failing Those With I/DD & Autism

Arthur Webb is an important figure in the intellectual and developmental disabilities (I/DD) field. He has nearly 50 years of experience in healthcare and human services, including close to two decades as a public official in New York State government as a senior executive or commissioner of several government agencies. Among them: Division of Budget, where he was responsible for the Medicaid budget; Health Planning Commission; Department of Social Services; Office of Mental Retardation and Developmental Disabilities (now OPWDD), and Office of Substance Abuse Services (OASAS). The man knows I/DD like few others.  

In 2022, Webb published a book titled, "Dangling on a String: The Future of Public Policy for the Field of Intellectual and Developmental Disabilities in New York State." It's a compilation of his essays around how poorly the U.S. healthcare system has maintained services put in place for people with intellectual disabilities many years ago.  

In my recent tenure as CEO of Chimes International, which provides services and support for people with both intellectual (developmental) disabilities and mental health challenges, I had first-hand experience encountering many of the issues Arthur brings forward in this book. While CEO, I bought a full box of Arthur's book and sent copies to all our board members. I encouraged them to read the book and discussed its critical contents as they applied to the services we rendered daily to our more than 24,000 annual clients.  

The title of Arthur's book is worded with precision. We are, as a field, at a precipice. The slightest movement of policy and funding can and will accelerate the destruction of the social safety net for these individuals with I/DD and autism.  

I highlight Arthur and his recent book for two reasons. The first is to recommend this book to anyone working in the I/DD and autism spectrum disorder (ASD) adult services field. The second is to speak to what Arthur is referring and why he surmises that the support net of services for I/DD is "dangling on a string." What does this mean, and why does it matter so much to those with I/DD and those working to help and support these individuals?

How I/DD is 'Dangling on a String'  

Let me begin by stating an uncomfortable truth: These days, federal and state-level health departments mainly care, from a policy level, about an individual with I/DD or autism if it means that individual is going to show up in an emergency room, be admitted, and occupy a bed at a cost of $1,000-plus a day. This is unfortunate, but I think it's a consistent experience across the country that cost is what's currently driving I/DD care — or the lack thereof.  

During the rollout of the Affordable Care Act, while working in New York on Health and Hospitals Corporation (i.e., NYC Health + Hospitals) grants that sought to create interoperability of electronic health records (EHRs) for "behavioral health" (i.e., mental health and substance abuse), the system realized welcome significant added funding. During that time and in the years since, the adult systems of care for adults with I/DD and ASD have received nearly nothing in the form of funds to advance the electronic coordination and oversight of care.  

The effects of this viewpoint and how it's shaping policy are nothing short of tragic. Whether you're one of the largest or smallest providers of I/DD services, you've noticed a change. In the past, an individual could plan to receive a group home bed if they fell into the old category of "moderate-to-mild mental impairment." Parents who provided home care to their children with I/DD and ASD had a relief they could plan for as they got into their senior years. These parents could take solace in the fact that when they passed away, their children would have a place to go and continue to receive care.  

Now what you're finding is that such an individual no longer comes to you for a group home bed. In fact, people with that profile may not receive any services if they fall into those "moderate" or "mild" categories. Often, the only people even considered for a residential placement are those that fall into the "severe-profound range of intellectual impairment." In other words, only those who are severely intellectually impaired and most often who have additional complicating medical (or behavioral) variables will ever qualify for a residential placement. In many places throughout the United States, waiting lists for such services currently exceed 10 years, and that's no exaggeration.  

Some of us working in this field a long time likely have vivid memories of Geraldo Rivera's exposé on the Willowbrook State School. I worked in the first group home in Manhattan that opened after the Willowbrook "consent decree" (i.e., closure). The 14 individuals in my group home were, in large part, those with moderate-to-mild intellectual disability. I was recently thinking about those same 14 individuals. I don't believe a single one of them would qualify for a group home bed today. Why? Because the transfer of risk from the government to nonprofit providers over the past few decades is simply incredible. Those same individuals would never in the current day be afforded a residential setting, and certainly not within a matter of months as occurred after Rivera's expose. 

This is one of the subjects Arthur talks about in his book. He also notes that governments have since put in place so many additional criteria, as to make it nearly impossible to comply and operate programs that afford progressive movement towards self-actualized greater independence. These regulations are additionally impacted by decisions such as the Olmstead decision at the federal level, with definitions on what is an "institution" (e.g., group home, congregate care setting). In New York, an institution is capped at eight beds. In most states, you can't operate a group home bigger than four beds. When you take into account staffing and real estate costs, is it any wonder that in places like Manhattan opening a residential program is nearly impossible?!?

Beginning to Fix the Broken I/DD System 

So where do we go from here? I think what makes the most sense — and what may not be a popular opinion — is to pump the brakes on a lot of what is being done in the adult I/DD and ASD field. Too many decisions — with big implications — are being based upon information that is not evidence based. It's easy to complain about what's broken, but how do you fix it? What I always come back to is: Do the research. You wouldn't introduce a new cancer drug unless you did the research to show it was effective.  

What kind of research should we be relying upon to make such policy decisions — decisions that have serious ramifications? 

This brings me to my final thoughts, and they concern how we define this "research" we'll want to use to make sound decisions about I/DD and ASD care. The N.Y. State Education Department uses three criteria to define acceptable research that I like. They are as follows:  

1. The research itself must be evidence based. This means the research essentially uses an independent variable so you can see that what you're doing is actually the reason for the impact you're measuring.

2. The research must be published.

3. The research must be peer reviewed. 

We cannot make decisions based on hunches and hopes. We cannot arbitrarily say an individual is going to do better because we're going to have them bypass a group home bed and instead stick them in an apartment and check in with them once a month to see how they're doing. Conversion of employment into "day activity" is another example of a system out of whack. That's what's happening too often today in I/DD, and that's the formula for a disaster that can and must be avoided. 

In future columns, I will seek to explore ways that the critical challenges Arthur Webb describes might be addressed from both a policy and operations perspective — before the string that is holding the current system is stretched too far and breaks.