During my tenure at the New Jersey Association of Community Providers, I have observed with great concern that there is this perception among a few parents that providers of community services to people with intellectual and developmental disabilities (IDD) cannot be trusted and only more regulation will keep them in check. There are hundreds of agencies in the state with more than 28,000 served under the auspices of the DHS’s Division of Developmental Disabilities. Stories touting families that truly love their providers and believe their loved ones are receiving outstanding care and are leading rich and fulfilling lives do not make the headlines. Without these providers, the question is where these individuals would be receiving services; we certainly don’t want to return to institutional care.
The need for a collaborative relationship between providers and parents is necessary. Without that dynamic, the result is layers of regulation and oversight with no discussion or resolution. One would be led to believe that providers of services to those with intellectual and developmental disabilities have almost no oversight and there are not already comprehensive protections for this community. I beg to differ.
Extensive oversights already in place
There are a number of local, state, and federal agencies with oversight of the delivery of supports and services to individuals with IDD. Oversight includes Danielle’s law, which requires providers to call 911 for life-threatening emergencies. Further, New Jersey’s Department of Human Services Office of Program Integrity & Accountability (OPIA), provides oversight of any and all adverse incidents, including abuse, neglect, and exploitation. This division investigates every reported incident and, in cases that have been deemed egregious or unlawful, a central registry has been established to record and report information that is used when hiring determinations are made.
Those who favor additional bureaucratic oversight support additional measures, including requiring cameras in group homes, community programs, and public transportation. It is true that some providers with group homes have elected to utilize cameras; however, this is not a quick fix and is not without controversy, as is in the case of New York and South Carolina, where state officials have decided not to move forward with this policy. One of the many questions that must be addressed, for example, recognizes that group homes typically comprise four individuals. How does one respect the rights of family members/guardians that find the cameras to be intrusive? This is someone’s home and should be viewed as such. At what point do group homes become “mini-institutions?”
There is no excuse for a tragedy such as that experienced by the Komninos family, prompting the Stephen Komninos’ law and additional oversight of the IDD community. It is a devastation that none of us, including providers, ever want to experience.
Perhaps before layering yet more regulations and mandates that stifle an individual’s right to community inclusion, we should explore why uncommon events such as abuse, neglect, and exploitation occur and work collaboratively to determine how best to address the root cause. Over $20 million has been spent implementing the Stephen Komninos’ legislation; perhaps it is time to dedicate funds to improving the wages of direct-support professionals and develop intensive training regarding abuse, neglect, and exploitation.
More regulation, a quick fix?
More regulation and more cost to the system are not necessarily the answer, and yet it appears to be the quick reaction to a highly publicized incident. How does one know what works in the community without ever having consulted the providers of services to those with IDD? To my knowledge, such a discussion with regard to cameras or other ideas has not occurred with a representative group of providers serving adults with IDD.
In reality, community services overwhelmingly occur in positive and safe environments, making a balanced narrative necessary when reporting events as well as when developing policy.
Instead of passing law after law that may make everyone feel better that action was taken, it makes more sense to pause and foster a collaborative approach that includes families and providers. We should work to create and/or strengthen the relationships families have with providers, working together to create a safe environment for all served. We should all agree that this relationship should not be adversarial but rather a partnership — isn’t this worth the investment of time?