IDDO logo

For those grappling with New York’s seemingly surreal and definitely complex service delivery system, help is here.

The state’s new Intellectual and Developmental Disabilities Ombudsprogram (IDDO), launched on Dec. 13, 2024 and mandated by New York State’s Mental Hygiene Law, is a brand new resource and advocate for individuals, families and caregivers designed to help them navigate the Office for People with Developmental Disabilities (OPWDD).

The program is being operated by the Community Service Society (CSS), a nonprofit with extensive ombudsman experience. It’s made up of a small, but we hope mighty, full-time team of 11 including counselors and attorneys.

Flor Ramirez

Flor Ramirez, supervising attorney, IDDO

Leading the effort is Flor Ramirez, a supervising attorney at the IDDO and mom of a six-year-old with autism. Also on the team: Rachel Shuman, training and outreach manager; Lynn Decker, quality assurance manager; Nancy Castillo, helpline manager; and, on the frontline, six helpline counselors with a seventh in the works.

Additionally, the New York Lawyers for Public Interest (NYLPI) is providing expertise and legal referrals on more complicated cases.

You can contact IDDO two different ways: Call 1-800-762-9290 or email iddo@cssny.org.

The Boost spoke with Ramirez about the importance of having a staff with lived experience in the world of intellectual and developmental disabilities, how the IDDO can help families, the power of listening and more. — Roberta Bernstein, Editor

THE BOOST: Thanks so much for speaking with The Boost. Let’s start with you, if that’s OK. Why did you want to manage this program?

FLOR RAMIREZ: I’ve worked on many different programs at CSS, including CHAMP [the Community Health Access to Addiction and Mental Healthcare ombudsman program]. As the mom of a six-year-old boy with autism who receives OPWDD services, I know how long it can take to receive services, from eligibility to getting the waiver to finding a fiscal intermediary. It was one of the reasons I was so interested in doing this.

So, how long did this process take for your son?

Well, almost three years.

Oh, wow.

I learned that you have to understand how the process works, the parties involved. It’s complex. There’s the DDRO [Developmental Disability Regional Offices], care managers, knowing who’s submitting what, requests for documentation. I’m an advocate by training — I can’t even imagine an individual trying to do this who’s busy, not an advocate, not in health care

In terms of what IDDO can provide, let’s take the example of a family whose child or teenager started the OPWDD eligibility process two years ago and still hasn’t been approved.

We’d start with an intake and then find out what they’ve submitted so far [in terms of paperwork and documentation]. We’d see if they know all the steps that need to be taken and whether something was missed. We’d then basically go through the process of escalating the problem.

That’s a complicated case. Some people might just need information such as help in finding community classes in their area, or in understanding what’s needed for a community class to be approved. That’s fairly straightforward. But there may also be the need to help them understand their fair hearing rights. We’ll try to accommodate everyone’s needs.

The IDDO also has a Regional Outreach Network. Can you elaborate on what this is?

The network consists of community-based organizations and parent-led groups through the state who conduct education and marketing on behalf of the IDDO. They spread the word about its availability and how it works, and they’ve been given tip sheets and road maps to share with families and caregivers about how to connect with the program and how to [navigate the system.] The network works as conduits.

We’ve just announced the network’s awardees, which consist of five community-based organizations and two parent-led organizations.

Let’s talk a little about the helpline. It’s made up of trained counselors who answer the phones and do the actual research and legwork. I imagine you want to reach as many people as possible. Does the IDDO have staffers who can speak multiple languages?

Yes, we have two helpline counselors who speak Spanish as well as two managers, including myself, who speak Spanish and are there to help out. We also have someone who can speak Cantonese and Mandarin. Best practice is to be able to speak to someone yourself, but we also use a language interpretation service where a counselor can call and say what language is needed and then an interpreter will assist with the call.

I imagine the helpline is pretty busy, or will get busy. If someone has to leave a message or email, how long is it taking to get back to people?

With the holidays just over things are pretty stable right now. Before then, we had about a three- to five-day wait in terms of getting back to people, but there was hyped-up demand. We think things are going to stay pretty level. Getting back to people is a priority, as is responsiveness.

Governor Kathy Hochul has described the program as an “independent voice” for New Yorkers with disabilities. To whom does the IDDO report?

We report to OPWDD.

Some people might wonder if that’s a conflict of interest.

It’s how the program was set up, and we’re not acting as a watchdog. Look, we know we can’t escalate everything, but we are following the processes for those who need our help. And we need to test the system so that if things don’t work, we can report on it.

I think OPWDD really wants to help. They want someone to gather data for them in an organized manner and to help those in need of services. We look forward to doing just that. We know there’s a very big need and giving us that chance to help is critical.

The IDDO will be responsible for a yearly report submitted to OPWDD. Will this report be made public?

We honestly don’t know. I have raised this with OPWDD leadership, but it is up to them.

I want to end by circling back to the work and to your team. The helpline especially is working with people who are understandably stressed and anxious, and this might take a toll on these IDDO counselors. It’s something The Boost discussed with New Jersey’s ombudsman, Paul Aronsohn in 2023, who talked about the need to be more schooled in trauma-informed care for their families and for themselves. Have you all discussed ways to handle this?

Yes, we’ve discussed this at CSS, especially in regards to the CHAMP program. We do meet twice a week so that people can talk about things, share what’s going on, and we always tell our folks if after a call you need to step away to breathe then that’s OK, to take care of yourselves.

I also think it’s why it’s critical to hire people with lived experience who are passionate about this work. It makes it more meaningful to them. OPWDD services have been so helpful for my son. I see his potential future and it’s why I’m so passionate about making things better.

We also know firsthand how important it is to understand why someone is upset and to know that they probably don’t feel listened to. Sometimes, we just have to listen. People deserve to be heard.

 

Note: This interview has been edited for clarity and length.

Images: Courtesy of IDDO.

 

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