Valerie Sellers vividly recalls when she first interviewed to be the CEO of the N.J. Association of Community Providers, the organization which represents providers who serve people with Intellectual and Developmental Disabilities.
“I said to them, ‘You’re invisible. Nobody knows you exist,’” she recalled. “I think the challenge of telling their story was very appealing to me.”
Twelve years later, an awareness of the sector is no longer an issue.
There was the pandemic, where the industry performed stunningly well but got little attention for it. Even more, the operators of group homes were incorrectly lumped in with operators of nursing homes, which did not perform well.
And there have been some horrific incidents of abuse and neglect, some detailed in the media, which Sellers will not defend.
The impact of all this is substantial.
“It has unfairly created an inherent distrust of the community,” Sellers said.
What to do?
In regard to state intervention, there certainly have been a series of rules and regulations that aim to address issues of the years — many of which Sellers feels have had more unintended negative consequences than positive impact.
So, in many ways, Sellers feels the state of the sector today is no different than when she started in it 12 years ago: It is a sector that must financially support itself – yet be under heavy state oversight. One that has an incredible time not only attracting new employees but also retaining the few who survive the long process.
“You have to have a real passion for this work or you’ll never last,” she said.
As Sellers prepares to leave the industry, she does so with great concern. There are a series of bills in the Legislature that Sellers feels will impact the system like nothing it has seen previously.
Sellers feels they are well intentioned. She said they are the result of family members of those in the system advocating for change. Sellers, however, thinks the bills come without proper context.
“There are a package of bills that are a result of a group of families that have come together and said, ‘We want to change the system,’” she told BINJE. “The problem is they don’t understand how the system functions from the provider’s perspective. Families utilize the system but do not have the knowledge of how providers must manage their service and supports.”
“So, when you come in and try to change a system without understanding how it functions, then you’re creating, in my opinion, chaos.”
According to Sellers, one particular bill – S-3752 – would transition providers back to the world of contracts, whereas, in 2013 providers were told they had to transition to a Fee-for-Service system.
“This bill would require agencies to function in two systems after they’ve invested tens of thousands of dollars to operate under FFS,” she said.
Sellers said her members are not against regulation and reform. She said the NJACP welcomes assistance. She is just bothered by the fact that the NJACP was not consulted on the proposed actions.
“I’ve been in association work for 30 years,” she said. “I’ve never had a sponsor who drafted a bill that didn’t consult the affected parties at the start of the process – ever.
“We were never brought to the table in crafting a package of seven bills. Had we been able to sit at the table with them, we could have jointly come up with some solutions to the problems that the families have noted — where either a loved one has been injured or passed away in horrible incidents.
“The legislature wants to impose fines on the providers. That’s not going to stop abuse and neglect. It’s just not. And as much as people may get frustrated when I say that I guarantee you that these bills will not impact that.”
As for moving forward.
“Although we would like amendments to the package of bills, we have not opposed most of them because we needed to focus on S-3752, which would completely undermine the I/DD community’s ability to expand to accommodate the thousands who are on waiting lists, living in institutions or nursing homes, or simply living at home but want to live in the community,” she said.
Sellers recently sat with BINJE to discuss all this and more. Here’s more of the interview, edited for space and clarity.
BINJE: Let’s start with your concerns about pending legislation. It’s easy to say, ‘These won’t work.’ It’s harder to provide solutions that will. Here’s your chance to do that.
Valerie Sellers: We need to keep bad players out of the system. That’s the only way we’re going to fix this. Right now, when you get fired from one agency, you can walk down the street and get a job with another agency. Because when they call for a reference check, they’re just getting dates of employment. That prospective employer has no idea that this person was fired because they abused a client.
We need a Nurse Cullen bill (which was passed in 2017 after it was discovered a nurse, who was a serial killer, had been able to freely move around in New Jersey and Pennsylvania). There were hospitals that suspected him of administering inappropriate medications, but they couldn’t say anything.
I’ve been advocating for the very same thing in this community. When someone is fired because they have found to be abusive, neglectful or exploitative, then get them out of the system, let somebody share that information – so they no longer work in the field.
Had we had a chance to come to the table, we could have had these discussions. We could have talked about how fines are just a punitive measure, not a strategy.
BINJE: You are outspoken about this because you say you’ve seen it before. Give us other examples of how well-intention regulations are not working as was hoped?
VS: In this community, legislation usually gets passed following an event. Danielle’s Law came about after a young woman died and it was found the group home failed to call an ambulance. The law basically says that if a DSP (direct support professional) fails to make a phone call for emergency services, then that individual – not the agency, the DSP – can be fined $5,000. What’s the unintended consequence of that? DSPs call 911 for everything.
Unless it’s a true emergency, the ER is the last place you want this community to be because hospitals are not equipped to deal with them. This law is from 2003. I can tell you the costs – not to mention the stress – associated with unnecessarily taking people to a hospital has run in the millions and placed a huge burden on local volunteer squads that must respond to every call.
I’ve tried for 12 years to amend Danielle’s Law but no legislator will entertain amendments to this 20-year-old bill without the consent of Danielle’s family, who have refused to support any changes to the original bill.
We are supportive of the use of telehealth to determine if an emergency exists. Station MD, a company comprised of emergency room physicians, can provide that support to DSPs, however, Danielle’s Law has created a huge obstacle in delivering care more timely, effectively and without the risk of exposure that we all face when going to an emergency room.
Stephen Komninos Law, passed in 2017, has added layers of oversight and paperwork. It says if somebody falls or is injured in any way, they have to contact the guardian within two hours and file a report with the state called an unexpected incident report or UIR. All UIRs are investigated internally and then submitted to DHS.
We don’t know how many UIRs are filed or how many are substantiated, along with all of the other data that would better identify where problems exist. We have not had access to these data, assuming it exists, so we don’t know if abuse, neglect, and/or exploitation has decreased since the passage of the Stephen Komninos Law. I would hope that such data would be analyzed prior to introducing legislation.
BINJE: Here’s an irony. All of these rules and regulations have come up after the starting point for group homes, the Olmstead decision by the U.S. Supreme Court in 1999, which essentially dictated that those with I/DD need to be taken out of institutions and included in society, often in group home settings.
VS: At the time Olmstead was handed down, most states had significant numbers of institutions. New Jersey had seven. We’re now down to five, which makes us one of three states with the most institutions. So, I would not say we’re particularly progressive in this area, but it wasn’t voluntary. If Olmsted hadn’t come along, I think many of the people with I/DD would still be living in institutions.
The Centers for Medicare and Medicaid Services created the home and community-based services (HCBS) to help integrate people into the community – and they received a lot of federal assistance.
In New Jersey, that changed in 2013. Providers moved from a contract-based system (where they essentially could bill the government for the services they provided) to a fee-for-service.
The state essentially said, ‘We’re out of this business. It’s now on you. You’re going to have to become certified by Medicaid to bill. You have to do the billing. And if you make mistakes, that’s your financial responsibility, not ours.’ In addition, providers would no longer receive financial support from the state for purchasing homes, renovations, vans, among other costs. Under the contract system, agencies could not have reserves; they have since established reserves which allows them to further expand and serve more people with I/DD.
So, our members are supposed to act independently, but they can’t. That’s where the push pull comes with the state and the legislature and regulations come in.
BINJE: Of course, that may not be the biggest challenge. As someone with a special needs child, I’m eternally grateful for those who do this type of work. It does not pay well. It comes with a lot of regulation. How challenging is it to staff facilities for the I/DD community, whether it be a group home (which often is three to four caregivers for four members of the community) or day centers, which care for a huge amount of the population?
VS: You have no idea. We did a recent wage and salary study and found the annual turnover was 42% – and that’s down from 44%. And this is after our members spend thousands to find someone – only 1-2% who apply are qualified – and then go through an extensive onboarding process that involves 60 hours of training not to mention physicals and background checks.
Just finding people is very challenging. Keeping them is even harder. We struggle to pay as much as some retailers and food chains – and the work is much harder. Try to explain to people that you may have to change the diaper of an adult, you may have to use a lift and bathe them, they may hit you or throw things at you. Even people who sign up for this – who we invest so much into to training – will change their mind and leave.
BINJE: Forgive us, but why do people stay?
VS: Because they are committed to the cause. When they see what our community overcomes, the level of pride that they take in their accomplishments, it’s truly heartwarming.
We all have limitations. But we all want the same things: To live a full life. To have friends. To work. To contribute. To have a home where we feel safe and cared for. People in the I/DD community are different. And you may have to relate to them differently. But their wants and desires are not different than anyone else’s.
BINJE: On your final day, we’ll offer you the final word.
VS: To have the legislators understand all aspects of our community and the people who serve them – to truly understand what is needed – is critical. They say all the money from these fines will go to the DHS in a quality fund.
Why are you not putting it back into training on abuse, neglect and exploitation?
And why are you passing more bills when you haven’t even evaluated if the bills that you’ve already have in play are effective? To me, that’s irresponsible.
Our community is incredibly hard-working and dedicated and they care for individuals that many in our society shun. They deserve better.
