Abuse is still happening in group homes for people with intellectual and developmental disabilities. I want to help people stop it.
As I’ve written in the past, my brother Matt has autism and a visual impairment. In our 24 years together, Matt has let me into his world—and has trusted me to keep him safe and keep him smiling.
For New Yorkers with intellectual or developmental disabilities (I/DD), one of the residential options for the future are group homes. The group home system is a nebulous, complicated system I’ve always wanted to understand, because family members entrust it with their loved ones’ safety—entrust staff to keep residents safe and smiling. Group homes have become my focus for graduate school. I’ve just finished my first semester at the Craig Newmark Graduate School of Journalism at CUNY, where I’m pursuing an M.A. in Social Journalism. We pick communities we want to work within to create positive change through journalism. I’m working to investigate potential abuses of power at group homes, help people report incidents, and give them the tools and information to stop further abuse and neglect.
My community
My community is multi-tiered and includes
- People with I/DD and/or autism who live in group homes in New York
- The people who love them, including family members, friends, and guardians
- The people who care for them, including group home staff and external staff
- The people who make up the rest of the system, including advocates and activists, doctors, lawyers, and community organizations
One goal of my engagement work is for my community to guide my coverage; then I will focus on bringing everyone in this system the information they need to stop abuse. My biggest reporting goal is to amplify and center the voices of people with I/DD, helping them tell their own stories. I’m not giving anyone a voice—everyone already has their own. And I’m going to include everyone.
Why the focus on group homes?
Being part of Matt’s world has sparked an interest in group homes that people who aren’t siblings, might not have. I‘ve also always been interested in learning about complexes like the group home system that make people who are vulnerable to neglect and abuse even more vulnerable. These complexes lead to abuses of power and obstructions of justice, and they’re not talked about enough.
Have you heard of Willowbrook State School? Geraldo Rivera’s WABC-TV investigation into the widespread abuse and neglect happening at Willowbrook on Staten Island in the 1970s is one of the most well-known reporting projects about Willowbrook. Rivera and other journalists’ work spurred a class action lawsuit and eventually contributed to the passage of the Civil Rights of Institutionalized Persons Act of 1980.
But according to some people I’ve spoken to, today’s group homes are just… smaller versions of Willowbrook. Here’s what some sources have said about the broken group home system:
- Our state constantly and consistently deprioritizes people with I/DD and their living options
- Years-long waitlists for home placements lead to placing residents in homes that are inappropriate for them
- Families are given little to no guidance in navigating the system
- Staff are underpaid and undertrained
- Residents can be abused
- Homes report incidents of abuse themselves, and reviewing the reports often leads to zero action being taken, or staff being transferred to other facilities instead of removed from the system
What my sources have shared with me is private and sensitive, so I cannot reveal more at this time. But their words — the trust they have placed in me — push me forward. An important caveat: not all group homes are bad. Some can be the right fit; some can be exactly what a resident needs. I’m not here to demonize every single home or staff member.
Several parents identified funding as the main issue in the system. So I asked myself: What could be the root of the problem? In class, we learned that mental models influence how people think about issues, and how and why issues exist in the first place. Consistent inadequate funding could be the result of the broad societal mental model that disabled people are expendable (an idea reflected in COVID-19 care), or that people with disabilities are not useful to society.
Both of these ideas are wrong, obviously. But they could influence why so little of state and federal funding is given to programming and services for people with disabilities. I hope the journalism I produce can help break down those mental models for the public.
My community’s needs
Part of engagement journalism is identifying what the community you’re working with needs, so you can fill in information gaps. Here’s what I’ve learned from talking to people:
People with I/DD need to be able to share their stories. They also need to know their options for residential care, their rights once living in a home, and how to best advocate for themselves.
Families need to know how to check on their loved ones, especially if they don’t live super close by, and how to spot signs of abuse, and report it to the right organization.
The group home system needs money. One of the biggest factors in abuse, people have said, is inadequate training and pay for staff.
Who I’ve spoken to so far, and next steps
To understand the debate around institutionalization, I’ve spoken to community members on Twitter — activists, advocates, and people with I/DD. Some people believe institutionalization should be abolished; that full community integration is the only correct option for people with I/DD. I didn’t grasp the other side of the debate till I started talking to parents of adult children in homes, too. According to some parents, for people with specific care needs, a group home environment is necessary. Parents from Western New York to Long Island have shared with me both positive and negative experiences of group homes.
My next step is talking to group home staff, then speaking to residents in homes themselves. It’s not super easy to reach them, as many people might not have access to cellphones, computers, or social media. I’ll be going through family members and staff to talk to residents — the main people I want to talk to.
My biggest challenge in reporting on abuse, I knew, was finding it. So far I’ve found anecdotes of it that I can now verify.
Challenges within my community
It’s important to understand how my community relates to itself and other communities. Here’s what I’ve discovered as a few barriers to reporting:
- Informed consent: I want to be sure my sources with I/DD understand what it means to be interviewed for a story. I’ll be trying to make my interviewing and all work accessible through plain language, like ProPublica did for this incredible story. It is vital but seems tricky. (If it’s not tricky, let me know! I am always looking for guidance.)
- Journalists get disability wrong in so many ways: I’ve started asking sources “What do journalists get wrong when writing about this?” to avoid making the same mistakes. I’m working with this community to serve information needs, not portray people incorrectly.
- COVID-19: Normally I’d be able to go to group homes; now I have to talk to residents on the phone, and can’t see anything with my own eyes. Hopefully I’ll be able to visit homes by the summer!
Engagement strategies going forward
I’ll engage my community with callouts, similar to what has worked for ProPublica. One callout might be
Have you or a loved one lived in a group home for people with intellectual or developmental disabilities? Help me report on the system.
I’m using social media to talk to people. I’ve learned that parents of adult children in homes are very active on Facebook, and the disability community at large is active on Twitter. I’ll be speaking to people directly over the phone, texting, and Facebook Messenger, and connecting with organizations such as the New York Alliance for Developmental Disabilities or any of the state-run agencies that run group homes.
Going forward, I will learn the group home system like the back of my hand, and decode the OPWDD website for myself. This system is complicated, and I can’t help anyone if I don’t fully understand it. I will continuously ask what people in my community need and how I can help them get it.
Another engagement strategy I’ve already mentioned is creating accessible articles and other forms of reporting. This ProPublica story was translated, with the help of specialists, to plain language, audio formats, and Spanish. The artists who created portraits for the story have disabilities. The whole thing is a masterclass in inclusion and listening.
The reporter and editor published a note on why they chose to publish all these translations, and the reporter, Amy Silverman, mentioned her personal connection with the disability community. As someone who also has a personal connection, the desire to ensure my work is accessible to the people I’m working with is even more important.
This work won’t culminate in a single story or even a series of stories. By the end of this, I hope to have enough material for a lifetime of stories, engagement projects, journalism services, or anything else that might help stop abuse.
For the rest of my time at CUNY, and in my career…
I want to help people inside and outside the group home system spot signs of abuse, report it, and make sure it’s stopped — or make sure the people perpetuating abuse face the correct consequences. I want to make sure people with I/DD are centered, given access, and helped advocate for themselves. I want the people I’m talking to to shape what I talk about. I want to tell the truth. I want to help people change this system, which has failed too many people and families to count.
Have a question or a tip? Am I doing something right, or totally wrong? Tell me everything! You can reach me on social media at @jacquineber, email me at jacqueline.neber15@journalism.cuny.edu, or comment here. I am so looking forward to working with you.
