Comment by Commentator: Good article and exposé on the system of residential services for adults with developmental disabilities. It is worth mentioning that the Medicaid waiver referred to in the article (commonly called the HCBS waiver – for “Home and Community-Based Services”) is state specific. Meaning, even though the money is federal, the states administer it. So, if you move from one state to another it doesn’t follow your child. You have to reapply, go to the end of the line, and hope that your new state has the same (or better) eligibility threshold as your old one, offers at least the same array of services (including non-residential), number of service hours, and doesn’t require years of waiting to obtain them. Most states have substantial waiting times. Finally, it would be interesting to know how Soto’s former behavioral aide, Charles Kinsey, is doing today after being shot during the encounter.

Charles Kinsey, with his arms raised, and Arnaldo Rios Soto in 2016. (WNYC)

Arnaldo Rios Soto was filmed on a cellphone video in the summer of 2016 after he walked out of his group home in suburban North Miami and sat in the middle of a quiet intersection holding a silver-colored toy truck that police mistook for a gun.

Soto, who has autism and is nonspeaking, was accompanied by a behavioral aide, an African American man named Charles Kinsey. When police came, Kinsey lay on the ground with his hands in the air, shouting that Soto was not a threat. Nevertheless, an officer fired, wounding Kinsey in the leg and leaving Soto traumatized.

Soto became famous as an illustration of police violence, but nearly two years after the shooting, his story reveals a different problem. People with disabilities are at risk not only of abuse by the police but also by the very systems charged with their care and protection.

America’s disability-services system takes in billions of dollars in Medicaid funding to care for people with disabilities and integrate them into the wider community. It often relies on isolated, institution-like facilities where residents are subjected to physical restraints and antipsychotics to keep challenging behavior under control. Disability-rights advocates have long argued for reform, and under the Obama administration, stricter standards were established for group homes that receive federal funds. Those rules are now being reinterpreted by the Trump administration.

“That’s a huge danger that needs to be guarded against to meaningfully prevent abuse and neglect,” said Shain Neumeier, a Massachusetts-based lawyer and activist with autism who is focused on disability law.

In need of round-the-clock care after the shooting, Soto, then 26, was committed to a hospital psychiatric ward until a new group home could be found. But a stay that should have lasted a few days turned into more than a month as the agency charged with his care, Florida’s Agency for Persons with Disabilities, or APD, struggled with a lack of suitable options.

The demand for in-home and group-home care is growing nationwide. Advocates say the small, individualized settings provide a better quality of life for people with intellectual and developmental disabilities than the rigid structure of institutions. But most states, including Florida, require people to obtain a Medicaid waiver to cover the cost of group homes or in-home services. (Medicaid covers institutional care.) And there are not enough waivers. More than 400,000 Americans were on waiting lists for a waiver in 2016.

APD offered Soto a place at Carlton Palms Educational Center, a care facility for the severely disabled outside Orlando. The state had prohibited the facility from accepting new clients just months earlier because of a spate of abuse reports, according to a settlement agreement, but with few alternatives for Soto’s care, it made an exception.

In the past two years, APD has received more than 680 incident reports related to Carlton Palms, and the Lake County Sheriff’s Office has responded to the facility more than 100 times. Since 2013, two residents have died, and despite state-mandated video surveillance on campus, video was unavailable for both deaths.

Florida’s Department of Children and Families has substantiated a number of abuse cases, ranging from a staff member striking a resident with a belt to another choking a resident until he nearly lost consciousness. Disability Rights Florida, a federally funded advocacy and protections group, released a report earlier this year finding that Carlton Palms failed to comply with reporting requirements.

The facility is owned by Bellwether Behavioral Health, which also operates homes in Delaware, New Jersey and Virginia. It declined repeated requests for an interview but said in a statement, “When incidents inevitably occur, we strive to address them responsibly.”

Carlton Palms holds a unique designation under Florida’s Medicaid program, as a transitional education program meant to help residents progress to less-restrictive settings. That designation qualifies it to receive funding for community-based services under Medicaid, totaling more than $21 million last year. It also means the facility is not subject to the federal regulations typically applied to institutional facilities.

Yet Carlton Palms bears many of the hallmarks of regimented, institutionalized care. Soto lived among more than 150 residents on a remote five-acre campus. He had set times for meals and going to bed. He lined up with other residents to walk from one building to another.

“There are places like Carlton Palms all across the country,” said Alison Barkoff, director of advocacy at the Center for Public Representation. They are community-based care only in name, she said.

While at Carlton Palms, Soto suffered frequent cuts and scratches on his body, according to his mother, Gladys Soto. And although he was assigned to be continuously monitored, she said, Soto was able to obtain a razor and shave his own head before staff noticed.

Leaving his room at night was risky. Although Soto displayed no signs of violence, his caregivers categorized these late-night strolls as an act of aggression, according to his behavioral therapist, Nikki Keefer, who is not affiliated with the center. She’s watched surveillance footage of staff physically restraining him. “Four or five people would put him down and hold him down,” she said.

Florida’s Agency for Persons with Disabilities declined interview requests, saying it would not comment on individual cases, but it said in a statement that it “has no tolerance for any failure to protect the safety of those in our care.”

Two months before Soto’s arrival, it reached an agreement with Bellwether to close Carlton Palms. At the time, APD said it would complete the closure by March 2019. After the most recent death at Carlton Palms, in March of this year, APD imposed a $10,000 fine on the facility and filed a court case to revoke its license.

Michael J. Martin, the chief executive of Carlton Palms’ parent company, wrote to the Florida APD in response, “We are dismayed by these allegations, many of which we deny outright, and others which we feel are misleading.”

In early May, APD announced that Bellwether plans to cease operations in Florida by the end of the month. APD says it will appoint another company to take over Carlton Palms until all residents are transitioned to other facilities. It will try to retain the same staff.

Bills in the state legislature to shutter Carlton Palms have been introduced in past years but failed.

A review of administrative complaints filed by APD shows that the agency has repeatedly backed down after efforts to penalize the facility. In one case, APD asked for thousands of dollars in fines but settled for increased employee training. In another, it sought a one-year moratorium on admissions but, two months later, settled for more video surveillance. In that same complaint, the agency noted conditions that “threaten the health, safety and welfare” of residents but determined it would be too disruptive to close the facility. Carlton Palms houses about 30 percent of disabled Floridians with challenging behavior who are in residential facilities. With few other qualified group homes in the state, the agency has expressed concerns about where these residents will go.

This lack of alternatives allows providers such as Carlton Palms to convince families that their facilities are the only option to care for their loved ones, said James Toews, a former official within the federal Department of Health and Human Services. Families, in turn, become some of their fiercest champions, putting “tremendous pressure” on elected officials to keep them open, he said.

Denise Cosco enrolled her son at Carlton Palms when he was 14 years old. He’d been kicked out of other group homes because of his aggressive behavior, and when he was home, Cosco says she called 911 several times a month out of fear he would harm himself or others. “I was definitely in a crisis situation,” she said.

After a decade at Carlton Palms, Cosco said staff have helped Gene Cosco control his behaviors and move to a new facility that is less restrictive. “I would not have the son I have today, who is so well behaved, if it were not for Carlton Palms,” she said.

Under the Obama administration in 2014, the Centers for Medicaid and Medicare Services, CMS, published a new rule requiring facilities that receive community-service funding to meet certain requirements, such as permitting residents to eat or sleep on their own schedule and allowing them to interact with members of the community who aren’t disabled. Facilities that didn’t comply would lose their designation.

However, states have lobbied to weaken federal oversight in the implementation of those requirements. And under President Trump’s appointee, Seema Verma, a former health-care consultant who has worked closely with a number of state Medicaid programs, CMS is reviewing its guidance on how to execute the rule. It’s expected to grant states greater discretion in determining which facilities meet the new criteria, according to those familiar with the proceedings but not authorized to speak publicly.

In a statement, CMS said it’s weighing input from a variety of parties, but disability-rights advocates are concerned about giving states more power when federal investigations have shown that without oversight states routinely fail to regulate or report improper conduct.

APD has begun transitioning residents to new homes. However, Florida’s budget for closing Carlton Palms includes language allowing it to end the process if the federal rule is invalidated.

Soto is one of about 50 residents who have already left. He now lives with one other man in an Orlando group home. Another intended housemates was one of the two residents who died at Carlton Palms. The recent court case APD filed against Carlton Palms alleges he died after a staff member removed a protective helmet required for his medical safety and taunted him with it. An investigation into the death is ongoing.

Aneri Pattani is the producer and Audrey Quinn is the host of the new podcast series, “Aftereffect,” from WNYC Studios. It takes an in-depth look at Arnaldo Rios Soto’s story and the state of the developmental disability-services system in the United States. Subscribe at