From Tragic Death, a Law to Safeguard People with Developmental Disabilities

Lilo H. Stainton | June 20, 2017 | Health Care
‘Komninos Law’ protects individuals at residential facilities and day programs, requires families and guardians to be notified within an hour of any problems

Martha Cray of Roselle Park, whose son has lived in different residential facilities, speaks in favor of laws aimed at protecting the developmentally disabled. Listening is Thomas Komninos, whose 22-year-old son Stephen died in 2007 from choking on food while unsupervised at a group home.
After nearly five years of citizen advocacy and legislative review, New Jersey is one step away from mandating greater state oversight and transparency at myriad independent programs that serve tens of thousands of adults with serious developmental disabilities.

The state Senate cast the final vote Monday with unanimous support for legislation designed to better protect these vulnerable people in residential facilities and day programs; to ensure family members are informed of problems that develop; and to increase the penalties for front-line workers who harm disabled individuals in their care. Among other things, the bill requires state officials to conduct two site visits a year and forces program operators to report physical abuse to guardians within an hour.

The proposal, known as “Stephen Komninos Law,” is named for a 22-year-old man with intellectual disabilities who choked to death in 2007 when his caregiver at a residential facility left him unattended, against doctors orders. It passed the Assembly in December with full support and now awaits Gov. Chris Christie’s signature to become law; his office has a policy of not commenting on pending legislation.

Years of effort

The bill’s success resulted from years of tireless advocacy by Komninos’ father, Thomas, and others with family members who have suffered under state-run care, and its legislative champions, including Senate President Steve Sweeney (D-Gloucester), Sen. Jennifer Beck (R-Monmouth), and Assemblywoman Valerie Vainieri Huttle (D-Bergen).

“What happened to Stephen Komninos was a horrifying, preventable tragedy,” noted Beck, who is also pushing for an independent ombudsman to help those with disabilities and their families better navigate state services. “Clearly, there are a number of cracks in the system that are putting people at group homes and other types of care facilities in harm’s way. This law would establish comprehensive set of checks and balances to ensure what happened to Stephen never happens again.”

But some in the developmental disability community have suggested that the resources it will take to implement such a law could be better spent elsewhere. According to an initial fiscal review by nonpartisan legislative staff, implementing the program could require the Department of Human Services, which oversees several thousand programs for developmentally disabled adults, to hire several hundred additional workers at a potential cost of $24 million annually.

Better pay for frontline caregivers

Tom Baffuto, executive director of The Arc of New Jersey, an advocacy group for individuals with developmental disabilities that also operates group homes throughout the state, urged lawmakers to instead direct that funding to improve wages for the frontline caregivers; these workers now earn an average of $10.50 an hour. Many improvements have been made since Komninos’ death, he said, and improving pay will do more to create a stable system than occasional site inspections from state officials.

“We believe it’s the state’s responsibility to make an investment in the workforce,” said Baffuto, who suggested the law could actually cost the state as much as $36 million annually —funds that could be better spent trying to fill the 20 percent vacancy rate in the workforce or reduce the 40 percent annual turnover, he noted. “We think a reliable system needs a reliable workforce.”

The DHS’s Division of Developmental Disabilities cares for roughly 25,000 Garden State adults with significant challenges. The vast majority live in community-based residential facilities, or in approved apartments, while around 1,500 remain at the five state-run developmental centers. Many of these individuals also participate in community-based day programs overseen by the division. According to Baffuto, all these facilities and programs depend on more than 23,000 direct-care providers.

Surprise visits

The legislation, (A-2503) would require that DDD staff pay at least two unannounced visits each year to group homes and apartments to ensure patients are not being subject to abuse; it calls for one unannounced and one planned visit to day programs. An earlier version mandated a half-dozen surprise inspections annually, but providers and other stakeholders raised concerns that this would require significant resources.

The plan would also mandate that program staff contact guardians within an hour to report any minor, moderate, or serious physical injury to loved ones in their care. It would require the initial communication to involve an in-person visit or a phone call, but follow-up conversations can take place by email or text message. The bill would also force DDD staff to make a site visit within 48 hours of any such complaint.

In addition, the proposal would require direct-care workers to be drug tested before they are hired and mandates that state-funded programs re-test workers at random several times a year. It would also raise the penalty for providers who harm individuals under their care, with fines ranging from $5,000 for the first offense to $25,000 for the third.

“There are no excuses and no good reasons for violating the standards of care of those who are vulnerable,” said Sweeney, who worked with families to pass Tara’s Law in 2012, which outlines similar protections for disabled individuals in foster care. “This will establish standards of oversight and accountability that will prevent abuse and, in those instances where it happens, to provide swift actions to see that it is not repeated.”

Finally, the measure seeks to encourage greater communication with, and between, parents and guardians. It would require staff at state-run developmental centers to hold twice-annual meetings with guardians to answer their questions, and make community-based programs offer to share contact information among the family members of loved ones in their care.