Some disabled group home residents are frustrated that their reports of abuse and neglect aren’t being adequately addressed by the state agency responsible for investigating. So I created a self-advocacy guide to make the process more accessible and transparent.
For the last 18 months, I’ve been working with intellectually and developmentally disabled New Yorkers and their families to understand their frustrations about the disability system. I’ve done a lot of listening, relationship building, and writing — and there are so many stories and issues to talk about now, at the end of my time at Newmark. But one issue with one agency stood out.
The Justice Center for the Protection of People with Special Needs is the state agency responsible for investigating and substantiating allegations of abuse and neglect that are reported from group homes for people with disabilities.
The Center was created in 2013 with the passage of the Protection of People with Special Needs Act. It is designed to safeguard people with disabilities who receive services through the state’s Office for People with Developmental Disabilities, as well as people who receive services from other state agencies. The Justice Center is a centralized place to report abuse and neglect cases through the Vulnerable Persons’ Central Register. It also engages with residents and families to increase awareness of itself, advocate for people, and create better practices for group home employees.
Approximately 36,000 people, according to OPWDD, live in certain kinds of group homes for disabled people throughout the state. The types of group homes are called Supervised or Supported Individual Residential Alternatives (IRAs) or Intermediate Care Facilities (ICFs); other certified housing categories exist too. Group homes are run by either the state or voluntary agencies. While the Justice Center provides the final determination in all abuse and neglect cases, sometimes private agencies perform self-investigations of abuse and neglect cases.
According to director of public information Christine Buttigieg, the Justice Center “undertakes extensive outreach efforts,” including hosting seminars for individuals and families, soliciting feedback from an Advisory Council (50 percent of Council members are individuals who have received services or their personal representatives), and operating an Individual and Family Support Unit. The Center’s website was also overhauled in 2019 to make agency processes more accessible, Buttigieg says.
Other resources the Justice Center provides include
- Residents and families can call 800–624–4143 or email supportcoordinator@justicecenter.ny.gov to contact advocates.
- The Technology-Related Assistance for Individuals with Disabilities (TRAID) Program can connect disabled residents with assistive technology to help them communicate.
- Investigations guidance for individuals and families is provided in several different languages.
- Jonathan’s Law discusses residents’ and families’ rights to incident records.
Residents and families have expressed frustrations about Justice Center processes.
To be sure, the Center’s efforts help many people, and some people have had positive experiences within group homes and with the Center. But in many interviews and conversations over the last 18 months, residents’ and families’ concerns shared these concerns:
- No/little communication during the investigation process
- Cases that family members feel are irrefutable have been returned as “unsubstantiated” — sometimes several cases per individual resident
- Inaccessible information because of a difficult-to-navigate website and language that might present a barrier to understanding
- Little awareness of the Justice Center itself
- Private agencies that are allowed to self-investigate cases of abuse and neglect contribute to a culture of cases going unsubstantiated so agencies can protect themselves
Here are just a few things people have to say. These are opinions based on peoples’ individual experiences with the Justice Center; the cases represented in these quotes have not been independently verified. But it is my job to listen to my community and reflect their concerns.
- “I have experienced abuse and neglect going unfounded, and the abuse continues.”
— Eric Bisantz, who lives in an IRA in Buffalo - “I am very disheartened by the Justice Center. They have not helped me once.”
— Barbara Rios, whose daughter lives in an IRA in Suffolk County - “If I spoke up to staff, they would get mad and go on their way. So I was very careful of what I chose to speak up about. I walked on eggshells all 15 years I was there.”
— Kelly Thomas, who lived in a Steuben County IRA from 2001–2016 - “I’m disappointed that the agencies designed to protect vulnerable individuals are really kind of falling down on their jobs. I’m not afraid of hard work, I don’t shy away from doing what needs to be done. But it feels like we’re constantly treading water.”
— One Westchester mom whose son lives in a group home
These are just the people who have been willing to go on the record. Family members have also expressed hesitancy about going on the record for my pieces for fear of retaliation against their loved ones.
Ultimately, residents and families have found the Justice Center’s information to be inaccessible and its communications to be untransparent. As part of my final semester at Newmark, I created a product to help change that: an accessible-self advocacy guide for group home residents called “How to Stand Up for Yourself in Your Home.”
“How to Stand Up for Yourself in Your Home”: The basics
This self-advocacy guide teaches residents
- How to identify abuse and neglect
- Who to call if abuse or neglect occurs in their group home
- How the Justice Center’s investigation process works
- What their rights are as residents
In order to truly solve these information gaps, I needed to make sure my guide was understandable and usable for as many people as possible. It has
- Been translated into plain language by Dr. Rebecca Monteleone of the University of Toledo
- Will soon be translated into Braille
- Undergone pre-publication review with an attorney
- Been delivered to residents and families however they best receive information: through the mail, email, Google docs, and more
I’ve measured impact and gathered feedback in untraditional ways.
Our entrepreneurial journalism class this semester taught us how to measure impact in ways that were very useful for products that reached many people in more traditional ways, such as newsletters. But my product, and my community, is unique. Group home residents might receive information in untraditional ways and might be a little harder to reach. So I measured impact, and gathered feedback, on a granular level.
- To get “How to Stand Up for Yourself in Your Home” to residents, I asked how they best receive information, then delivered it that way
- Similarly, I got on the phone with people to talk about whether the guide was helpful
- Family members called me or messaged me with their feedback
- I have reached ~10 individuals with the guide so far, and feedback has been overwhelmingly positive, with one family member saying the guide is “direly needed”
There is one principle of entrepreneurial journalism that sticks with me. We learned that sometimes the most successful products solve a deep need for a relatively small group of people — and by that measure they are really helpful. “How to Stand Up for Yourself in Your Home” hasn’t reached thousands of people yet, but it attempts to solve a deep need: residents’ need for a product that helps them advocate for themselves, breaks down information barriers, and provides agency, as everyone deserves.
Community partnerships allow for awesome opportunities.
So far, I’ve been in talks with three NYC-based disability rights organizations about them potentially distributing my guide. Partnering with groups who disabled people and their families already trust is really important to me and will hopefully get the guide into more group homes. Working with community groups will also allow me to measure success through their own metrics.
The future of “How to Stand Up for Yourself in Your Home”
A journalist’s work is never done and this work won’t end once I graduate from Newmark. The future of this guide includes partnering with more community groups across the state to reach more residents and families in different regions, as well as potentially printing “business cards” so the Justice Center’s phone number is available on hand. There are a lot of opportunities for scalability, growth, and impact that I’m really excited about.
I hope to reach as many people as possible. But in reality, if “How to Stand Up for Yourself in Your Home” helps one group home resident when they need help, that is success to me.
Questions, comments, or tips? I’d love to hear from you — and get you “How to Stand Up for Yourself in Your Home” any way you’d like. You can reach me at @jacquineber or jacqueline.neber15@journalism.cuny.edu.
