Opinion: Celebrate, strengthen a disability rights law

This week marks an important milestone in the civil rights movement for people with disabilities:  the one-year anniversary of the passage of the Stephen Komninos Law in New Jersey.

Named after a young man who died almost 10 years earlier to the day — due to inexcusable neglect by his group home staff — the landmark law established policies and procedures for protecting those with intellectual or developmental disabilities. Specifically, it put in place several measures for helping to prevent further abuse and neglect in residential and day programs.

Among the most notable requirements:

Two unannounced site visits every year by a Department of Human Services (DHS) representative to community residential settings.

A two-hour timeframe for agencies to report injuries to families/guardians.

Injury verification within 48 hours by a DHS representative.

Drug testing of direct care staff.

Without question, the new law is a much-needed step forward that provides a level of oversight and accountability that has never before existed. It is also essentially the first official acknowledgment that abuse and neglect are a reality for many in the disability community.

But now, we need to take the Stephen Komninos effort to the next level and explore additional ways to provide protections to people with intellectual and developmental disabilities.

Here are two such possibilities:

Expand the law to cover children. Currently, the law only applies to adults over the age of 21.  We don’t know the reason for this age restriction, but clearly, our children deserve the same protections in their group homes and in their after-school programs. This goes without saying.

Increased use of cameras in group homes, community programs and public transportation.  Many people with intellectual or developmental disabilities do not have the capacity to report bad behavior or other concerns.  In fact, many are non-verbal – meaning that they have limited ability to communicate.  The use of video cameras could provide a much-needed set of eyes, particularly in potentially precarious situations. This could be a win-win approach – one that could be good for those with disabilities as well as those responsible for caring for them. Such cameras are already permitted by our state government. 

Moreover, the use of cameras is not a new or even controversial idea. The Paramus-based Children’s Aid and Family Services has cameras in its adult group homes and just received permission to use them in its homes for children. And the Bergen County Community Transportation program, which serves people with disabilities, uses cameras in all of its buses.

The story continuesbelowthe video.

Again, these are just two suggestions. Both practical. Both seemingly needed. But there are certainly other ways to strengthen the law, and we would welcome additional ideas for making sure that those with disabilities have the protections they need and deserve.   Indeed, this should be an ongoing process that continues to evolve over time and as needed.

To that end, we should learn from the experience that got us to this important anniversary. We should follow the example set by parent-advocates, such as Martha Cray, Aileen Rivera and the Komninos family, who led the grassroots effort that brought the need for serious reform to the attention of government officials.  We should recognize that it was state legislators – on both sides of the political aisle – who responded in kind and made the Stephen Komninos legislation a reality.  And we should acknowledge that it was governors and their staffs – on both sides of the political aisle – that signed this landmark law and put into effect. 

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Ultimately, everyone involved realized that there was not only a legal imperative driving this effort; there was a moral one, too.

Now, going forward, we should build on this solid foundation by working together and taking additional steps to safeguard those with intellectual or developmental disabilities.   Expanding the law to include children.  Strengthening the law to include technology.  And developing new and better ways to protect those who need protecting.

We not only owe it to Stephen, who would have been 33 years old this year. We owe it to all of our sons, daughters, brothers and sisters.

Thomas Komninos is a parent-advocate, who helped lead the effort to enact the Stephen Komninos legislation named after his son.  Paul Aronsohn is New Jersey’s Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families.