Arron – 2023

We arrived at a private airfield in San Antonio, Texas, in time to watch the Pilatus air ambulance make its final approach. Our regional director in Texas, Samantha Cutler, and I were ready to take over care of Arron Davis, a 34-year-old man who was arriving from a Massachusetts institution.

The aircraft taxied to a stop, and as the roar of the engines faded, ground crew wheeled air stairs to the door. A man in a white shirt and jeans brought our new client down the stairs and pushed him onto the tarmac like a sack of potatoes. Almost six feet tall, with long brown hair, the man looked lost, confused, and frightened. I gasped and Samantha’s grip tightened on my arm. The institution’s staff had shackled Arron for the flight. Later, we discovered they had also strapped him to a gurney.

The sound of handcuffs and leg irons filled the quiet morning air as he shuffled forward. Once he regained his balance, he looked at the blue sky, squinting in the bright Texas sun. Silence of the Lambs came to mind. I recalled the scene, filmed in an aircraft hangar, where armed guards wheel Hannibal Lecter in to face Senator Ruth Martin. Strapped to a hand truck, wearing a grotesque mask, with his hands and feet shackled, he looked the epitome of evil. But the scene before me was not a movie.

We’d met Arron in Massachusetts a few weeks earlier. He was a resident at the Judge Rotenberg Center, where staff regularly administered electric shocks to residents to modify undesirable behaviors despite the controversy surrounding the practice. My organization deems this practice both ineffective and morally objectionable. Whenever feasible, we move individuals like Arron, who face severe intellectual disabilities, into home environments with around-the-clock care.

There is no doubt that Arron is unpredictable and challenging. People with level three autism, which is characterized by severe challenges in social communication as well as extremely inflexible behavior, struggle to manage and show their emotions, making them intensely frustrated. They often lash out at themselves and others, but Arron had hurt no one and committed no crime.

Samantha marched up to the white coat. “Remove the shackles now.” Her voice was calm and polite, yet radiated resolve.

“No can do, Ma’am, he’s dangerous. He’s likely to lash out on the drive to the house.”

I took a step forward and then changed my mind. Samantha stood firm; without breaking eye contact, she deliberately said, “Remove the leg irons,” drawing out each word. Her voice had a chilling edge that left no doubt among those present about the outcome of the confrontation.

The attendant shot me a sullen glance as he took out a key and unshackled Arron’s legs, drawing out the process longer than needed. The tension was palpable, but Arron was calm. Once free, he flexed both ankles and looked across at Samantha with gratitude.

Thirty minutes later, we met the handover team in the driveway of a modest, detached house in a pleasant San Antonio suburb. It will be Arron’s temporary home until we purchase housing for him and others, in his home state of New Hampshire. He will receive 24/7 personalized home and medical care, and the Community Options care team will never physically restrain him.

Samantha walked up to the house. The aides were manhandling Arron to the front door and were about to take him inside. Samantha stepped in front of them and refused to let them cross the threshold. “This is our house. Remove the handcuffs and leave—now.”

CHAPTER 1

People with Disabilities Deserve Better

“There are over 7 million people with IDD in the United States, which encompasses over 100 different diagnoses, and over 80 million family members who love and care for them.” ¹

My entire career has focused on supporting people with intellectual and developmental disabilities, so I am often asked: “What is your definition of disability?” In simple terms, it is a trait that limits a person’s cognition or independent functioning. Examples include people with intellectual disabilities such as Down syndrome or autism and others who have exclusively developmental disabilities like cerebral palsy, and spina bifida.

Another term that I will use a lot in Silent No Longer deserves clarification. That word is institution. A wider definition refers to just about any religious, educational, or social organization like a prison for instance. For our purposes, I’ll use what we call the burrito definition—if you are unable or not permitted to leave the house at three in the morning to go buy a burrito, chances are you are either a child or living in an institution. In my world, institutions are where people’s dignity of choice and freedom go to die.

Sometime ago, I visited a large institution in Corpus Christi to interview a resident with the goal of placing her into one of our small family homes. The Corpus Christi Supported Living Center is a 100-acre campus housing 200 people. Once on the grounds of the institution, I lost my bearings and couldn’t find the building to rendezvous with my contact person. I saw a man weeding a flower bed and asked for directions. He stood up from his work, removed his cap and muddy gardening gloves, smiled, and said, “Follow this path until you come to a fork and then bear right. Walk down there for about a quarter of a mile and the building should be adjacent to an enormous pecan tree on your right.”

I thanked him and asked, “How long have you worked here?”

He replied, “Oh, I don’t. I live here.”

We talked for a few minutes longer and as I walked away, I thought, I could get that guy a job tomorrow and he could live in his own apartment with minimal assistance.

This is an example of a forgotten soul warehoused in an institution, living like a minimum-security felon, for no reason other than he has a disability. His life was being stolen by an archaic system. We should never force individuals who have never committed a crime against society to live in an institution. It’s that simple.

Silent No Longer will bring attention to how America has consistently failed, and continues to fail, people with developmental disabilities. I will highlight the dangers your family, friends, and loved ones face from shameful relics of failed public policy, misinformed government leaders, outdated institutions, and archaic thinking. How a modern, but dangerous, trend sees private equity firms purchasing organizations that currently support people with disabilities. I see this as an attempt to monetize these individuals. The end result is greater profit for private equity lenders, and in my experience, compromised care. I have yet to meet anyone other than the principals of these corporations who believe private equity involvement in the care of people with disabilities is a positive step.

I will outline a new way forward, one that is better for people with disabilities, their loved ones, and for taxpayers. My goal is to change perceptions, while giving people with disabilities a voice and a platform to prevent them from becoming lost in a broken system.

It has been my privilege to work with people with disabilities for over forty years. My mission has been and continues to be the rescue of as many people as possible from the dangers of being institutionally warehoused. In these facilities, people are mistreated, segregated, and divorced from society. I will prove that people, even those with severe disabilities, can thrive in the community living in apartments and single-family homes where they receive the level of care they need for up to twenty-four-hours a day, seven days a week. My non-profit organization, Community Options, currently supports over 5,000 people across the country, providing care for people with disabilities in hundreds of small homes, and within their own homes. Since 1989, we have helped over 10,000 people. Our philosophy is that all people, including those with the most severe and profound disabilities, should enjoy basic rights such as inclusion, self-determination, dignity, and access to opportunities for growth.

In the last five decades, landmark legislation has changed the landscape for people with disabilities. They received the right to free education, non-discrimination for employment, and government-funded job training. However, this failed to make a significant difference in the lives of those who have the most severe developmental disabilities.

The Civil Rights Act of 1964 prohibited discrimination based on gender, ethnicity, color, and religion—not a word about people with disabilities. Nine years later, The Rehabilitation Act of 1973 enshrined in law that people with disabilities would be treated equally regarding employment opportunities in federally-funded organizations and programs, including vocational training. In 1990, President George Bush signed the Americans with Disabilities Act (ADA) into law to ensure that people with disabilities had the same entitlements and opportunities as anyone else. Federal court action, which precedes legislation, has also improved the rights of people with disabilities. In 1999, the U.S. Supreme Court’s Olmstead decision “found the unjustified segregation of people with disabilities is a form of unlawful discrimination under the Americans with Disabilities Act (ADA).” ² The intent was that people with disabilities should be placed, and receive services, in the most integrated setting best suited to their needs.

However, no matter how many guard rails have been codified into law, the rights of people with disabilities remain compromised. Let’s revisit Arron from our opening story. An institution shipped this young man across the country shackled by his hands and feet like a mass murderer. The question I continually ask, and to which I am yet to receive a satisfactory answer, is why are institutions still warehousing 17,000 people with intellectual and developmental disabilities? Why are some of these horror houses continuing to use cattle prods, aversion therapy, restraints, and corporal punishment including electric shock treatment?

You may know or know of someone with an intellectual and developmental disability. Maybe your son, daughter, nephew, or niece has autism, Down syndrome, ADHD, cerebral palsy, or some other disability. If so, then you know it does not have to define them. One has to look no further than the famous physicist, Stephen Hawking, who had ALS (also known as Lou Gehrig’s Disease). Despite experiencing this neurodegenerative disease, Hawking discovered that black holes release detectable radiation, enabling in-depth research into these celestial phenomena. In 2021, Elon Musk announced on national television that he has Asperger’s syndrome, a form of autism spectrum disorder.

Every person has potential, including those with significant disabilities. Whether they reach it depends on the level of support they need and receive. We, as a community, need to recognize the value in humanity, all humanity. We need to be patient and tolerant enough to search for every human-being’s potential and bring it forth.

In my experience, a large percentage of those who have been written off as unsuitable for transitioning into the community, even those who have been regularly restrained in an institution, are prime candidates for not only living in a small group home, but for employment and educational opportunities. That may sound like hyperbole, but I will introduce you to astounding individual success stories throughout this book. Arron, for instance, after just a few months of acclimating to his new home with our professional staff, can now visit a local grocery store escorted with a support staff person and select his favorite foods and snacks. Although practically nonverbal, he waves to the clerks he recognizes and to neighbors who live nearby. They know him not as Hannibal Lecter, but as that sweet young man at number six-twenty-two.

Recent history has proved systems that favor the isolation and neglect of people with disabilities don’t work. They are not sustainable, they are not humane, and they are not cost effective. In these pages, I will prove beyond doubt that people with disabilities belong in the community. With the appropriate level of support, they are capable of thriving in our neighborhoods, walking our streets, shopping in local stores, learning in our schools, working in local businesses, and interacting with members of the wider community. Every day, in towns and cities across America, my staff change attitudes and perceptions, one neighbor and one community at a time.

This book is as much the story of the people we support as it is mine or the organization I founded. Throughout its pages, you will meet many more people like Arron, along with inspiring individuals like Bernard, who has intellectual disabilities and is visually impaired. I first met him in early 1992 in New Jersey, at the Johnstone Training and Research Center, which was closing. Bernard was sitting in a small room with ten other people at a table and I asked him what he was doing. Bernard replied, “I take the markers out of one box and put them in another. Pretty stupid, eh?” He did this for hours on end as some kind of tortured therapy. Bernard’s humor precisely captured how meaningless the institution had made his day-to-day existence. Fortunately, by the spring of 1992, Bernard became a resident in our first home. He joined four other men, who we also rescued from Johnstone. We helped him find a real job and five years later, he purchased his own home. I am privileged to call Bernard a friend.

There are almost seven and a half million people with intellectual and developmental disabilities in the United States (2019). Over seventy percent are under the age of twenty-one. ³ A significant percentage have received an autism diagnosis. Most of these individuals are fortunate enough to live with their families or in small group homes. Unfortunately, some remain warehoused in institutions.

Surveys show that over eighty-seven percent of couples who have children with disabilities wind up in a divorce. ⁴ All too often, this leaves their “child” in limbo. Some family caregivers become ill or disabled themselves, others simply lack the resources to care for their children. And what happens when a “child” reaches their twenties, thirties, or forties and their aging parents can no longer manage their care? If they have the financial wherewithal, they may hire private caregivers. If not, they place their loved one on a state waiting list for placement into care.

Unfortunately, waiting lists for community-based programs are long. KFF (formerly the Henry J. Kaiser Family Foundation) and state entities say that the average wait list is forty-five months. However, this is a shell game because states remove people from waiting lists once they receive a single hour of service. For example, according to KFF, New Jersey has no waiting list. The trouble with that assertion is that if you add back those people waiting for 24/7 care in housing placements, the number is not zero it’s closer to four thousand. Another issue with KFF is that their data becomes corrupted when states don’t participate in their surveys. There is often a wide discrepancy between the services people need, in order to live independently, and the paltry stopgap measures the state provides in order to avoid scrutiny and appease any waitlist watchdogs.

This situation varies significantly from state to state. The wait list for people with disabilities in Pennsylvania exceeds 12,000, while in other states there is no wait list because there is nothing for which to wait, or the circumstances for delisting someone is creatively defined. For example, if Jimmy needs twelve hours of supervision and support, and the department of human services decides that this level of service is unavailable, they can pay a family caregiver two hours a week under a waiver. This “service approval” facilitates the person’s technical removal from the waitlist. As I said, it’s a shell game—now you see it, now you don’t.

In New Jersey, there are over 125 licensed service providers. ⁵ In Mississippi, there are fewer than five. In Texas, larger for-profit companies are used to provide care. In my opinion, these corporate entities offer marginal care at best. What I find crazy is that there is no synergy between states when it comes to looking after those who most need our help. Rules are different, and terminology varies by state to the extent that it is contradictory. Pay rates for direct support professional (DSPs) can differ between states by several dollars an hour, and while most states work with Medicaid, not all do, which is a major issue.

Later, I’ll talk about some of the people we have rescued from emergency rooms, where they were abandoned by the institution they called home, or by family members who failed to get timely help from their state and could no longer cope.

So, what’s the answer? There needs to be more residential care provided by non-profit organizations, such as Community Options, which are licensed by individual states to provide services to people with I/DDs. In Chapter Eight, Follow the Money, we’ll look into for-profit companies funded by private equity that have discovered looking after people with intellectual and developmental disabilities can be lucrative.

As large state-run institutions close, the Case for Inclusion ⁶ report shows that around 590,000 people are on waiting lists for home and community-based services. Interestingly, seventy-eight percent live in just five states (Texas, Ohio, Louisiana, Florida, and Illinois). One of the challenges noted is staffing. Nationally, a little over twelve percent of full-time direct support professional (DSP) positions were unfilled at the end of 2020, an increase of forty-five percent year-over-year. The cause? DSPs are undervalued and underpaid. This needs to be rectified, and soon.

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Society has exploited people with disabilities for hundreds of years. The issue was and, in large institutions remains, what do we do with people with disabilities during the day?

In the 60s and 70s, devious entrepreneurs working in this field realized residents could create income. For example, the institutionalized can be “employed” growing fruit, vegetables, and flowers for sale in onsite greenhouses. Remember the stereotypical image of disabled individuals weaving baskets? Small Occupational Training Centers—aka Sheltered workshops, or as I think of them, sweatshops, were created where hundreds of people with disabilities sat at tables doing piecework for non-profit agencies like Easter Seals, supervised by institutional staff. Ten million widgets packed by hand? No problem. Frighteningly, they still exist. A ProPublica report in 2022 reported on workshops in Missouri that employ over 5,000 people with intellectual, developmental, or physical disabilities and pay them less than $1 per hour. ⁷ Although, disability rights activists have called these workshops discriminatory and exploitive, they are legal.

People with disabilities have been oppressed in many other, far more appalling ways. Beginning in the mid-50s and spanning two decades, the Willowbrook State School for Children with Mental Retardation experimented on its residents using them as glorified lab rats. In a scene that could have come straight from a Stephen King novel, they gave children milkshakes laced with fecal matter from other children suffering from hepatitis, so scientists could develop a vaccine. Parents, desperately searching for somewhere to place their child, would give permission for this draconian experiment out of fear that Willowbrook would refuse their application. Letters to parents asking for permission came from the State of New York, Department of Mental Hygiene, Willowbrook State School, Staten Island. Amazingly, the doctor responsible for the experiment had as many supporters as detractors from both the medical community and politicians. He went on to have a successful medical career. It was these types of abuse that Geraldo Rivera exposed in 1972.

With patience, tolerance, and an open mind we can uncover each person’s potential. Frighteningly, there are those in our society who believe the world would be a better place if people with disabilities did not exist, or at the very least, they were hidden away behind closed doors—out of sight, out of mind. This attitude is not new. America has been failing people with disabilities for a long time. I hope I can do my small part to reverse this trend.

1. The Arc of the United States (November 20, 2023, https://thearc.org/blog/the-arc-of-the-united-states-names-katherine-neas-as-its-next-ceo/)
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2. Serving People with Disabilities in the Most Integrated Setting: Community Living and Olmstead, U.S. Department of Health and Human Services
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3. Residential Information Systems Project (year). [Page Name]. Minneapolis: University of Minnesota, RISP, Research and Training Center on Community Living, Institute on Community Integration. Retrieved from: https://risp.umn.edu.)
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4. Divorce and Special Needs Children. Ann Gold Buscho Ph.D. Psychology Today. February, 2023
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5. Department of Human Services- Office of Program Integrity and Accountability DHS Licensed Provider Report Card Report on Data Collected between January 1, 2023 and December 31, 2023
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6. The Case for Inclusion 2022: Blazing Trails to Sustainability for Community Disability Services. 2022 by United Cerebral Palsy & ANCOR Foundation
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7. What the Disability Community Told Us About Sheltered Workshops. Madison Hopkins, The Kansas City Beacon, ProPublica, November 19, 2022
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