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Pursuing Adult Services

About This Episode

Podcast host Adam Dayan, NYC Special Education Attorney, discusses the process of pursuing adult services with Heather Deutsch, teacher, parenting coach, and founding member of Imagine Academy.

As a mother of 24-year-old triplets and an 18-year-old son, Heather shares the turbulent journey she navigated while seeking adult services for her nonverbal, autistic son. While describing the seemingly endless roadblocks and bureaucratic obstacles she encountered, Heather speaks about the benefits of having legal representation and the need for resourceful advocacy when fighting for one’s disabled adult child.

(LISTEN) The Curious Incident Podcast Ep. 19 - Pursuing Adult Services

Transcript Below

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Transcript: Pursuing Adult Services

Announcer: This is Curious Incident, a podcast for special needs families, and your window into the world of special education. Special needs parenting can be challenging, and we want to make it easier by providing you with the resources you need to help your child.

Step deep into the world of learning differently with your host, special education attorney, Adam Dayan. Adam Dayan: I am excited to present Heather Deutsch as my next guest on this podcast.

Heather is joining us to talk about the subject of pursuing services for your adult child.

Heather Deutsch worked in the public school system teaching first and second grade for

15 years before marrying and raising her family.

Heather is mom to a set of triplets, two daughters and a son who are 24 years old,

as well as another son who is 18. When the triplets went to high school, Heather began her second career in teaching nursery school which ultimately led to her current profession of parent and coach.

Heather is also one of the founders and a board member of Imagine Academy, a school

for children with special needs in Brooklyn.

Heather, thank you so much for joining me here today. Heather Deutsch: Pleasure Adam, I'm so happy to be here. Adam Dayan: It's good to have you.

So we're here to talk about pursuing adult services.

Before we get there, give a brief overview of how you got to where you are now and why

adult services were needed in the first place. Heather Deutsch: When my son turned 21, the year that he was turning 21, I knew that he was aging out of his program, the program he attended for 16 years in Brooklyn, Imagine Academy.

And I began to prep for the next phase of his life, which is dayhab services, similar

to a school program, but more vocational and with a group of his peers.

I worked with my care manager who has been with us since Philip was a young boy. It's part of the Medicaid services. It's a provider who helps navigate all of the paperwork and the services that Philip was entitled to.

So I prepared for that.

I filled out all my paperwork.

I made connections.

I had him registered for a program, a dayhab program, so the transition would be seamless.

And in March of the year he was to age out of his program, he began to exhibit some

self-injurious behaviors. The self-injurious behaviors had always been in his life, but they were manageable and controlled by medication tweaks and behavioral inputs.

Adam Dayan: Was that around the start of the pandemic that they started to work?

Heather Deutsch: Coincidentally, it was really a complete coincidence. It was not one thing having to do with the other.

He was sent home from school at the beginning of March because the school was aware that he had exhibited some of these self-injurious behaviors before. He came home.

He was okay for the rest of the day, the following day the behaviors were there.

And what I'm talking about is what was initially a hand-biting or biting his shirt or scratching his hand. That day when he was home, that day he started to punch himself in the face. And it was extremely scary and shocking. And we immediately called his psychologist, the person who has been in his life for the last six years. And we tweaked one med and it helped that day. And then the next morning, the third day he woke up and within 15 minutes he began hitting himself with a vengeance.

It was extremely scary and painful and we didn't know what to do.

But we acted.

We went into survival mode and we literally held his hands down so he couldn't hurt himself. And this went on for two months, actually. And saying it now sounds unbelievable because how could we have allowed this to go on for

as long as we did? But it always passed in the past.

The pandemic shut everything down, which gave us zero resources.

No school, no hospital, no nothing.

And our doctor was on the phone with us daily telling us what to do. And finally, two months in mid-May, the doctor told me I was dealing with him primarily that

it was time to go to the hospital.

And it was as if you asked me to throw my son in the garbage.

It was the worst statement he could have made. We were in shock and disbelief. That was our plan. That had to be what had to be. And we procrastinated for two days because the thought of sending our son to, and not only the hospital, a psych unit is actually specifically what he suggested.

And it was awful, and we brought him, and it was really, really hard to leave him.

My husband spent 10 hours in the psych unit because there was no bed and because they didn't understand what to do with my son.

I went home to my other children, and it was just such a fog and such a trauma.

And ultimately, he was admitted, and the second he was admitted, I was on the phone for hours talking to the admitting doctor, talking to the social worker, trying to give them every single bit of information I could so that they would understand my non-verbal 24-year-old son with autism, who, at the moment, was out of his mind and inflicting such pain upon himself.

It was very important for me that they understand this is not a routine.

This was not yet another visit to the psych unit, that this was the first time he had

exhibited anything like this, and that he needed help, and he could not help himself.

That led to a three-year journey filled with many, many ups and downs and many, many highs and lows.

Adam Dayan: It sounds brutal for any parent to have to deal with.

I'm a parent myself. I have four kids, and I can't imagine the emotional strength that it required to manage that situation. So, I give you a lot of credit for navigating that.

So, he spends how long in this psych unit at the hospital?

Heather Deutsch: He was there for 18 months.

The first six months, maybe even the first eight months, it was necessary.

He went through a lot, and he really needed a lot of medication and just downtime, no

distractions, just to be. And thankfully, the staff and the doctors were unbelievable, loving, caring, understanding, nurturing.

They did everything that I wish I could have done myself.

So is there for 18 months. After those initial eight months, all along, I had been trying to get him out and find an appropriate setting because obviously a psych unit is not an appropriate setting for a person in crisis who has autism.

Adam Dayan: Do you want to talk a little bit more about that?

Just describe the circumstances of the hospital setting?

Heather Deutsch: So, it was Mount Sinai, which is a wonderful institution.

It's a fabulous hospital, but it was a hardcore psych unit and acute psych unit.

Buzz in, buzz out, strings out, no knobs, bolted windows, no shower curtain.

Just like prison, in fact, the bed is just a slab with a thin mattress and to the doctor's

credits who were so loving and caring, they actually had a hospital bed sent over from

the Medside. So that Phillip would have, I mean, obviously, it's not a bed from your home, but at least cushions and up and down and some semblance of normal, at least for his sleeping.

But I will say even the blankets had to be just sheets. It wasn't even allowed a heavy blanket. Six, seven sheets I insisted they put on him so he'd be warm and no fresh air.

I mean, he didn't have fresh air in his lungs for 18 months. He didn't have sun on his face for 18 months, yet hospital food three times a day for 18 months.

Adam Dayan:

So we're talking about a place that's appropriate for dealing with an acute crisis, but not

anywhere that someone would want to be or a parent want their child to be for a prolonged period of time or more than necessary.

Heather Deutsch:

100% and absolutely not appropriate for a special needs person.

I mean, under no circumstances, I mean, Phillips hall mates were prisoners, drug addicts from the street, the things that we saw. I would never, ever see under normal circumstances. There was no crisis facility for a person with autism.

There was nothing.

Adam Dayan: So what happened between six to eight months when that period when you thought it was necessary and the rest of the time up until 18 months when he transitioned from that setting?

Heather Deutsch: Okay.

So at that point, at the seven, eight month point, the social worker went to a conference

and in that conference, she learned about an OPWDD run facility in Kings County.

Hospital was a pilot program for people in crisis. Within 24 hours, Phillip was there.

As soon as I knew what was happening, I immediately spoke to the doctor there and we realized Phillip was a perfect fit and he went there and we went to the hospital.

My husband and I, we rode in the ambulance all the way to Brooklyn to Kings County and Phillip was admitted there. That was an equally restricted setting, but it was a setting with professional people who were autism educated.

So although it was not ideal and it was the same limited visiting times and the same,

no outside, I felt more comfort because we were dealing with people who understood behavioral management and understood how to divert the behaviors and understood the medications. The psych unit was helpful, but they really didn't understand the way the medications work with one another. This doctor only worked with people with autism. So that was great. And Phillip was there for seven weeks and then he came home. He was discharged home and the doctor there was in disbelief that we wanted Phillip to come back home.

Of course, we wanted Phillip to come back home, and home he came and he was there for, I don't remember honestly how long, I want to say a month maybe and things were really, really great. And then at the end, he was up for two days straight out of nowhere.

He was great and not great, great. I mean, he couldn't go back to school. The pandemic had simmered down a little, but he was functioning and he was, he wasn't hurting himself anymore. And it looked like we were on the upswing. But then he was up for two days in a row and then he started to develop aggressive behavior towards me and he was pulling my hair, is what he did with enormous force.

And it was just such a chaotic time.

And I remember that my daughter, I didn't know at the time, but she called the ambulance. All of a sudden I saw five men from a local ambulance company, the Hatsalah in my house and they took Phillip away.

And I mean, this is a part of my story I don't like to think about or tell, but I will.

That ambulance, I wanted them to bring him to Mount Sinai, but they, I guess, have certain jurisdictions. And actually now that I'm talking about it, I remember they said Phillip's heartbeat was extremely elevated and they were afraid that something would happen on the way to the city.

So they brought him to my Maimonides hospital. And that was the worst experience we have ever had in our life. I thought Phillip was, we were going to lose Phillip.

They were intolerant of him.

They kept him tied up.

They denied him food.

They stuck a catheter in him.

My husband took a month off from work and my husband works for himself.

He stayed anchored to Phillip's bed for 28 days. And during that time, I was begging, begging, begging, fighting, fighting, fighting to get him out and transferred to Mount Sinai. And I was trying, my care manager was wonderful and we were trying to get him back into King's County, actually not Mount Sinai.

We were trying to get him back into King's. We sent a million emails to OPWDD. And after the course of several weeks, we were finally told that King's County operates

in a one and done, meaning you go, you get rehabilitated and then you're discharged.

And next, you may not go back, even though there was success, even though they knew my son.

Adam Dayan:

And they were trained in that area of dealing with kids with autism or at this point, he's

an adult with autism dealing with behaviors, but you couldn't go back there and the place that you wound up in that Maimonides didn't have anyone with those kinds of qualifications.

Heather Deutsch:

No, my Maimonides was a disaster. My Maimonides was an awful, awful place.

But the fact that Kings would not allow him back in was mind boggling and so scary and

so off-putting because now what? They discharged him, unstable.

He was home for 36 hours and then we called Hatala again at four o'clock in the morning. I will not forget that.And this time they brought him to Mount Sinai.

And he was readmitted to Mount Sinai and I made a million phone calls throughout the

night to get back to the doctors who I had come to know so well.

And he was admitted in 24 hours. We had a way for a bed. Again, my husband waited and I will say that when Philip was admitted the second time, they were in such shock and they were actually crying to see what had happened to him.

He lost in a month about 20 pounds and he really was on death's door.

They were besides themselves what that hospital did to my son and he remained there for a year again, one year in all. He was there for eight months and then he left for the seven weeks and then he was there

for another year. So yeah, 18, 19 months altogether. Give or take this time when he was there. He really needed to be brought back to health and start from scratch. But now he had a health piece.

The first time was more of an emotional mental piece.

This was a health piece. And to their credit, they treated him like their own child.

Philip was the king there. I mean, I'm proud to say he was the king of the psych unit, but he was given much love. And in fact, I still keep in touch with everybody. They still really want to know all about him. During the time that he was back, I was full throttle to find an appropriate setting for him.

I was given some information about a facility in Florida. I worked very hard.

Lots of phone calls, lots of emails, lots of begging.

Florida was set to accept him. New York State would not allow him to cross state lines.

They refused to fund, even though it was the only appropriate setting that was possible

and they knew that for a fact, the answer was no. But they did offer me that they would pay for was a skilled nursing facility.

They were willing to admit my son to a nursing home in Florida, which is like saying, ha,

ha, ha, but not. But the reason they said that, so that they looked like they gave me something and I refused it. And in the midst of that, I acquired some legal counsel.

Adam Dayan: I just want to focus on the Florida piece of this.

You're looking out of state is that because there's no appropriate settings within New

York or what is the reason that you're forced to look outside of New York State for something that he should be getting for his health and well-being.

Heather Deutsch: Yes.

So I remember there was a program in Connecticut. There was a program in Westchester. A lot of these programs cut off at 21. They didn't want someone who was 24 years old. So there was also a program in Maryland called Kennedy Krieger.

I pulled every string, made every phone call. I could to get him in there. I finally received an acceptance letter, which was thrilling until I read the paragraph that

said he will be admitted within the year. I needed him admitted within the day or two.

So that was that. So Florida was the only viable option because anything that I found within an hour or two from our home was not willing to accept him or could not accept him. My husband and I flew down to Florida for the day. We went, we saw it, and we really had high hopes. But the reason that OPW denied us was because it was state funding, state lines, and they didn't want to give Florida New York state money.


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With your host, special education lawyer, Adam Dayan.

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Adam Dayan: Okay so that was not authorized by the powers that be.

Let's talk about the powers that be OPWDD. What is it?

Heather Deutsch: That stands for awful.

Awful is really true.

There's a little freudian slip.

Office for Pupils With Developmental Disabilities, OPWDD.

They are the hub of all things special needs in New York state.

They control it all.

Adam Dayan: Okay, so when Philip transitions from Mount Sinai, does he transition to some kind of OPWDD run facility?

Heather Deutsch: Yes.

So what happened as we were denied Florida, It was brought to our attention, our meaning the attorneys and myself that OPWDD as an offshoot of the Kings County program, Philip was in began a program in Queens on the Creedmore Mental Hospital site called an ETU, an emergency treatment unit, and Philip was eligible to

go there.

That site was developed the December before Philip was admitted the following June.

Philip was in Mount Sinai in December. We were very vocal all that time and no one ever gave us this information about the ETU and he could have and should have been placed there. It was only when I obtained legal counsel that we put pressure on OPW that that bone was thrown to us. That was an option at the same time that I was working very hard to have him placed in a residential setting in Brooklyn where we live in Borough Park. And I was in constant conversation with that agency and I went to see the house.

I went to see the room that would have been Phillips.

That agency was kind enough to hold that bed for Philip for four or five months because

OPWDD kept leading them along. They had to file paperwork, paperwork, paperwork.

It kept coming back denied. It was such a terrible, horrible, disrespectful time and ultimately they told the agency, sorry, you can't do it. And then they said, but we have the ETU and he could go there and they really put me up against a wall because I didn't want him in another controlled setting. I wanted him. He was ready.

He was in the hospital. He was ready to be in residence and they refused. They had such control over my child that was not their right to have.

Adam Dayan:

So to summarize, you retained legal counsel. Only at that point did you find out from Mount Sinai that the ETU existed. You were given their information.

At the same time, you're pursuing a residence for Philip that falls through because of the

paperwork issues with OPWDD and then ultimately you decide to place him at the ETU.

Is that right?

Heather Deutsch:

Well, it was a decision that was made for me.

I was really not given a choice because staying in Mount Sinai was no longer.

I mean, it wasn't an option for many, many months and I certainly wasn't going to allow

it to happen. So under duress, I agreed.

Yes, I did. I didn't have a choice.

Adam Dayan:

When does a parent usually reach out to OPWDD in the first place?

When are you supposed to start dealing with them?

Heather Deutsch:

When your child turns 21, that's when you have to start looking at what's available,

which is this day-hab program. So ideally you as a parent are not really dealing with them directly ever. It's always your case manager, your care manager that turns all the wheels for you. But everyone is beholden to OPWDD. This residence that I wanted Phillip to go to in Brooklyn is an OPWDD run facility. And I only learned the power that they have as I walk through this whole experience with them. And if they could have, they would have gone against OPWDD's decision. But OPWDD is the mafia of all things residential and all programming at 21 plus. So they would have put them under a microscope and if they did one thing wrong, they would have been shut down, zero tolerance. So I could not in any good faith have allowed them to do anything that would have caused harm to them as an agency because they're all beholden to OPWDD.

Everyone is beholden to them.

Adam Dayan:

How do you initiate the process with OPWDD?

Is there an application?

What steps did you have to take to get the process started?

Heather Deutsch:

When your child is young, as soon as you get the diagnosis, let's put it that way, you

enroll in Medicaid waiver services, Medicaid waiver services. And that is designed to give the families programming for their children that are compensated financially through the state. There's something called respite, which is an after school.

You don't get the program, but you get the monies for the hours to put your child in

programming. You get money to hire help for your child. You get all medication.

If your child is on medication, that's on the city. If your child needs support, ambulatory things, diapers, whatever it is, those services are provided by Medicaid. Medicaid service, the waiver services are also an offshoot of OPWDD. So you're really not directly dealing with OPWDD per se, but you're in the system. You're in the system, which is the umbrella of OPWDD. There's the Department of Health, there's Medicaid, and there's the Office of Mental Health, and all of those departments are under that umbrella.

Adam Dayan: And once you're in the system, you're assigned a care manager who coordinates these services and the funding, correct?

Heather Deutsch: Yes.

But you cannot think it's all on your care manager.

As a parent, you have to be extremely invested and involved and on top of that person, because that person is a person, and that person works with many students, not just yours. So it's really on the parent to know exactly what's coming to them and make sure it's well executed.

Adam Dayan:

I think that's really important. Why don't you tell that story that you were telling me before we started recording?

Heather Deutsch: A good friend of mine called me on my way here, asking me for the email of a person in OPWDD. She needed that information because her son, who is 27 and is ready to move forward, was on a list called the Crow List, CROO.

I'm not sure what the acronym stands for, but it's essentially the list for all people

that want to be placed in a residential setting.

She, myself, and many other people I know all put our sons on that list when they were

17 years old, turning 18. Once you're on the list, you assume you're on the list.

And if you don't need to know if you're on the list, there's no reason to follow up

and make sure you're on the list. In any event, she is ready to move forward.

She asked her care manager where her son is on that list and was told he is not on that

list. OPWDD, whatever, I don't know how, how they revamped or reorganized or pressed delete, but he is not on that list. And the truth is, I don't even know if Philip is on that list anymore. I've been out of it for a while, but it was just an inadvertent error that is causing her a lot of pain and a lot of backtracking now.

Adam Dayan:

And something that she had thought she set up years ago, right? So you can't be too careful. You can't just assume that because you submitted the paperwork to OPWDD, it's been received or processed or you've been added to the list, you really need to follow up and be proactive and assertive.

Heather Deutsch:

Must be proactive, must be a thorn in your care manager's side with love. Ask for emails, paper trails, hard copies. You need to see everything you cannot trust that it is being done as you think it is. There are too many moving parts.

Adam Dayan: Let's talk a little bit more about the kind of communications or dealings you did have

with OPWDD. Do you want to say a little bit more about that?

Heather Deutsch: Yes, when Philip was in the hospital and everything was happening, that is really when I initially began to deal directly with OPWDD, hearing certain names, reaching out to certain people. And unfortunately, the first tier of people at OPW that I dealt with were I realized employees who get a paycheck and clock in and clock out and if they get to it, they will. In my experience in helping your child, half the time the person I was dealing with didn't even know who Philip was and I was constantly talking to them and they kept confusing him with someone else and losing his paperwork and I was someone that was really on top of everything. I really was and well, prior to him being in the E.T.U. I had several conversations with somebody at OPW, one of the higher ups. I really don't remember her title but she also didn't really give a lot of help or hope and it was a very disconcerting feeling that I was truly talking to walls. I mean, it's very, very scary.

I wish I could say otherwise but I can't. I really, really can't.

Adam Dayan:

And I don't know if we covered this before but what was his experience at E.T.U.

Heather Deutsch:

The E.T.U. there was a lot of privacy issues so my husband and I were not permitted to

go into the place that he lived. We were only able to visit in a conference room or take him out of the facility itself. We never met anyone that lived with him. He had two other individuals who were there. We weren't able to see them and it's a very, very state run organization. So every single thing is protocol by the book.

Two things I could talk about.

When Philip was in Mount Sinai it was very important to me that I show appreciation to

the staff. Every week I sent lunch, every holiday I sent a holiday meal, Thanksgiving, New Year's Eve, Christmas. It wasn't to get ahead. It was really truly, it was the only way I could show appreciation. They were literally my son's parents, all of them. So I wanted to do the same at the E.T.U. and the first time we went we sent over a bunch

of pizza. And we were told that Philip is the only person that could eat that pizza because it's such a state run facility giving food is considered a bribe.

Another incident on another side of the scope when Philip was released to us almost kind of like prison, they did a full body check right before they let him go to us.

Like a car rental, you know, no scratches.

When he got into the car one time we noticed a scratch on his face.

I assumed they shaved him because that was important to me that they keep him clean.

And I didn't say anything because I was thankful that they shaved him. I thought we spent our hour together. We brought him back 10 minutes as we're driving home.

I get a call from the E.T.U. Mrs. Deutsch, Philip has a scratch on his face.

I said, yes, I know. I assume it's from the shaving. I didn't want to bother you guys. Oh, no, he didn't have that when he left.

I have to write you up.

Adam Dayan:

Write you up.

Heather Deutsch:

Write me up. They write it up as an incident report.

Goes to the Justice Department and his mother was written up for scratching him.

She would not take my word. She would not listen. And I was so angry and I said to her, so my mistake was not telling you initially that he had a scratch. And she said that's right.

Adam Dayan:

That's really upsetting.

Heather Deutsch:

Yeah. So that's that OPPWD head protocol. I always said the people in the hospital cared so much about Philip and cared for him. The people in the E.T.U. took care of him but did not care about him. It's a very cold environment. And yes, it's challenging.

They're dealing with behaviors. There's definitely a lot of moving parts, but it's a very finite way that they handle the children.

Adam Dayan:

How long was he there at the E.T.U.?

Heather Deutsch:

So the E.T.U. ideally feeds children in crisis from a residence with the idea that they're

rehabilitated, minimum six weeks, maximum six months, and then fed back to the residence. Philip was a very unusual case being discharged from a hospital setting.

And I, with the help of my legal team, established initially there is no time frame here.

He will not be asked to leave. Obviously, I wouldn't want him to be there for extreme length of time. But under no circumstances was he to be discharged sooner than necessary. And they agreed with that. I wanted to point out one thing that the E.T.U., this is important to share just because it's so mismanaged also. First of all, it's on the grounds, as I said previously, of Creedmoor Mental Hospital. That I would never have seen it. You should never see it. No one should ever see it. It's closed down now. Fingers and acres and acres, I would say 50 acres of unused land. You drive through and it's like you're on a movie set. Everything is shuttered. There's ivy growing everywhere. It is sad and horrible. You drive straight down the road three, four minutes and then you see this oasis. It's like being in the Twilight Zone. It's a multi-million dollar project that OPWD defunded. It's one main building and then it almost looks like an old-fashioned bungalow colony. There are eight houses, shingle in beautiful pastel colors in a circle in the surrounding a common area. Only one of those eight homes are occupied and there are 12 beds and Philip was one of three people served. So all of it is severely underused and no one knows.

No one knows that it exists. No one knows to use it as resource and OPWD is not forthcoming with the information. It is only because I had legal counsel that I was made aware of this and I'm sorry for rambling. The director when I initially got there and we were talking told me to my face I saw Philip's name on my desk in December. Philip was admitted there the following June. Why I asked and she said we only work here.

I cannot say why does this boy not being admitted? I only read his paperwork.

Adam Dayan:

So first of all, these are spots that could be used for adults in circumstances similar

to fills. And second, the bureaucratic delays he could have been in there in December.

That's months of help and support that he could have gotten to be able to manage his circumstances better.

Heather Deutsch:

Absolutely 100%.



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Adam Dayan: Talk about the journey you had trying to find legal counsel to represent you.

What was that process like?

Heather Deutsch: Yes.

So when I was initially in this turmoil to say the least, it never occurred to me to

have legal counsel. I am a person that does everything on my own and I do not ask for help unless I really need it and I am a person very accustomed to giving help. And I also didn't realize the severity of the situation and the enormity of it and how much bigger it was than I am. When Philip was in the hospital, it was about three months into the second hospital stay, I received a call from an attorney representing Philip. It was a Mount Sinai attorney, she introduced herself and she was asking me if Philip is

in the hospital on his own free will because Philip is nonverbal. And I told her yes and I was telling everybody I spoke to the story and I was on the phone with her for almost an hour and I told her everything just to tell her not knowing where it would lead. And when we finished talking, she said I need to tell my supervisor this and she spoke

to that person who was on a higher level of legal counsel, not only for Mount Sinai but

for others. I don't remember what each person does, they're specific.

In any event that led me to speak with that attorney, that attorney led me to another

attorney who represents the city, not the underprivileged but the special needs people

of the city. When I spoke with her on each conversation last in an hour because I wanted them to know every single thing and again, I didn't realize that I was, that this was leading me towards legal counsel.

I was just talking to all these people, all these attorneys, that person, the third person

I spoke to told me that she works with several firms, they do pro bono cases, she's going

to make some calls and let me know and okay fine and I was just hyper focused on Philip, I wasn't really thinking legal, I was thinking how am I going to get him out of here.

And then she called me and she told me that a firm that she works with is willing to take

on the case. And the next thing I know I was speaking to the lead attorney and he was saying all these things that a lot of I did not understand and a lot of terms I didn't understand and that's where the litigation began, that's where the journey began and they were unbelievable, there was such a source of comfort, it was just amazing.

Adam Dayan: And this wasn't any old law firm, this was a very prestigious law firm that was agreeing

to take on your case at no charge.

Heather Deutsch: Yes, and I am embarrassed to say that when they were telling me pro bono, I didn't really remember what pro bono meant. So I just, you know, I said to my husband is whatever a course we're paying, I'm not not paying for this. And he too didn't even understand pro bono. And then when I spoke to the lead attorney and he said no cost, no cost. Wow, it was such a gift. And they treated me as if I was a paying client.

They never turned down a phone call. They were available any time of day I needed them. We had countless phone conversations, Zoom conversations. We had two mediation sessions last summer. One was eight hours, one was nine hours. They gave of their time as if I was anybody. I mean, the respect they gave to Philip and myself and I got to know them and become friendly with them and how many tears I shed with them.

It's very raw and it's very, you can't hold back. And it was all, you know, I wasn't being dramatic. I was living this life and they were wonderful, wonderful, unbelievable and so powerful. They would not back down. They would not back down and anything I wanted I got and I wasn't, I didn't want anything. I wanted whatever was right for my son and I was not told no ever in any step of the way. Nothing asked me to create wish lists.

Ideal locations. I mean, I'll share the ultimate when I was disappointed for the hundredth time. David, the lead attorney said to me, I know I can't do much, but what will make you happy? And I was so angry and I said, I want the curse word commissioner of OPWDD to come to Mount Sinai.

She needs to see who she's talking about and we need to talk to her.

And that was on a Wednesday and then that Friday he called me and said, you have a nine o'clock or ten o'clock slot on Monday. And she came, she flew from Albany specifically for Philip with her team. He sat in the conference room, my illegal people, me, her people, my daughters wrote letters so that they would understand who the brother was. We took photos. I brought photos to her. We ended our conversation and then she came with me to the fifth floor and she went to Philip's room and she met Philip. She saw exactly how my son is living while they kept messing up his life.

Adam Dayan:

I have more questions about this, but first of all, I want to underscore the fact that

you were able to find legal counsel, especially pro bono was a big blessing for your family, especially given the difficult circumstances you were dealing with. And the flip side of that is that there's very few lawyers who do this kind of work, correct?

Heather Deutsch:


Adam Dayan: So it's not easy to find a lawyer specializing in suing OPWDD.

You were able to find a prestigious law firm that was willing to take this on at no cost.

Heather Deutsch: Yes, that was a gift. That is a gift because generally, as you know, most of the attorneys represent the under 21 population and it's a lot of suing for tuition back, private schools, services. Everything like this is highly, highly unusual and rarely, rarely done because OPWDD is such a force onto itself. Very few people challenge them.

Adam Dayan:

Also highly unusual is demanding and getting a meeting with the commissioner.

So let's focus on that some more.

Where were you in your litigation when this came about?

Heather Deutsch:

Florida was on the table and then they denied us that.

So that made me besides myself.

And then the crumbs they offered after that was a place mint, a residential placement

in Brooklyn in a not favorable neighborhood. They painted a picture of cleaning house of the residents that were currently there.

Philip was going to move in. There was going to be highly specialized staff moving in with him and ultimately maybe one or two other individuals would move in.

Again, they pushed me up against the wall, they insisted I visit, I went, I saw it.

It was really irrelevant because according to them, none of those individuals would be

there. In any event, that was the path we were on. They sent two on two different occasions, staff from the house to see Philip in the hospital to get acclimated with him to understand them even though two times really didn't do much. And they basically told me, this is what you're getting, like it or not. And I agreed because my hands were tied and I was coming off of the floor to hope we were getting paperwork ready, prepping, timeframes, timelines, three weeks passed. The attorneys, we hadn't heard anything back, anything moving forward. And then one morning we get the hospital, the social worker, Jackie gets a call. He's not going there. No explanation. No plan B.

Complete shutdown and that was when David, my attorney said, what could we do?

And I said, I need to meet her. I need to meet her because two huge fails.

Two neither were ideal, neither were what I wanted. I would never want my son to live in Florida, but hope, hope and both times for no reason squashed. It was so evident how apathetic they are and they is OPWDD. There's not one person that works there that I have found that thinks or cares and I've spoken to a lot of people. So I met Carrie, the commissioner, she came. She didn't limit my time. I said everything I needed to say.

She agreed with everything I said, which was so sad and so horrible. And I remember I said to her, my son did not fall through a crack. My son is in an abyss. He is past the crack. And she said, you're right. And why I asked, so why? And it's a stock answer.

No staff underfunding, freeze on new residential structures. She didn't apologize for anything and she didn't disagree with anything I said, nothing. But the fact that she came and brought her legal team and knew what we were all about, prompted the ETU offering. And that's how all those things became in motion.

Adam Dayan: But on the residential side, I mean, as you said, she agreed with you. It sounds like she was pleasant enough in her dealings with you. Maybe she even wished she could do more, but her hands were tied. They just didn't have the staff and resources to do what they should have been able to do.

Heather Deutsch: Absolutely, yes.

Adam Dayan:

Did you reach out to politicians or other government officials?

Heather Deutsch:

Yes. I, in the beginning, before the legal team, I reached out to some influential members of the community I live in. We have a lot of political ties. I worked with two different senators, local to Brooklyn. And they were very nice.

I mean, I spoke with them directly. I emailed with them directly. And every time they thought they were getting a little wiggle room or something that they

could help me, they got shut down. They told, they apologized and respectfully backed down because they told me it's bigger than them. Everyone that I've dealt with on this whole journey has been extremely helpful and supportive. No one has ever told me no.

Everyone has always tried their best with the exception of OPWDD. They were the big no all the time.


You're listening to Curious Incident, a podcast for special needs parents.

With your host, special education lawyer, Adam Dayan.

If you like what you're hearing, please like and subscribe.

Adam Dayan: I know you're not an attorney, but what is your understanding of what the law guarantees your son at his age?

Heather Deutsch: When a person is 21, they age out of the program they're in, very often it's publicly funded. Sometimes it's privately funded and then you go through the legal process of suing the city and getting reimbursed, hopefully totally, but generally not.

Once they're 21, it's time for a day-hab program, day-hab services, which is essentially like a school. It's with young adults. Go there with transportation provided by the OPW.

You go there for a full day, nine to two, nine to three. And in that program, there are 15 to 20 young adults that have different activities throughout the day.

Sometimes it's cooking, sometimes it's music. There are trips, there are neighborhood walks. That is what your child is entitled to for the day. You are also entitled to a residential placement, a group home setting, where if you feel that you can no longer manage with your young adult at home, he or she has the option to be placed in a group home with other peers and people like them.

Adam Dayan: Did Phil ultimately get what he needed?

Heather Deutsch: Yes. Phil got what he needed. Philip, through a lot of work, the ending of this story is once I understood what OPWDD was all about and once I saw what they did and once I was no longer afraid of them because there was nothing more they could do, he was already in two institutional-like settings and had been disappointed in so many different instances. I asked if I could find the setting for my son to live in.

But let me just preface that with, while he was in the ETU, when he was initially admitted

actually because I had met with the commissioner, the agencies that were being given his case were endless. All of a sudden, they were actually, I just want to back up for a minute because when you are initially given an IEP an individualized educational plan when you're a young child with special needs, that IEP follows you till you're 21.

After you're 21, there's no more IEPs, but there's something called a life plan that

is developed, which includes everything about your child, his goals, his behaviors, his

habits, his, it's truly a life plan. That is all part of a packet that goes to OPWDD.

That packet is what is sent out when you are seeking a residential placement.

That is the CROO list. Let me go back. The CROO list is he's on the list.

Now you have a packet, which is all the history and information about your child.

That packet is supposed to be distributed to all potential agencies that will take on

the case to place your child in a residential setting. Philip's packet had been laying dormant all the time that initially I was trying to get a placement. There was no movement with his packet. That is something that I just remembered.

Adam Dayan: Whose responsibility is that to update the packet, prepare the life plan?

Heather Deutsch: Right. The care managers' responsibility to do an annual life plan and update the packet.

The parents are not privy to the packet. The life plan you're part of, especially if you have a nonverbal child, but I didn't know anything that was in that packet. It was only when I had my legal that they read the packet, which had not been updated, which was presenting Philip as he was when he was initially admitted to Mount Sinai, an

extremely hostile, self-injurious person, which explained so much of why there was no movement and no one wanted to take on his case.

So we had to redo the entire life plan updated. There was information that OPW pulled a report of a scan that he had done on his brain. A psychologist for OPW pulled the report from King's County's finding, made it his own and painted a picture of my son eventually, ultimately becoming a vegetable because of his degenerative brain disease, which was completely false information. All these things are coming back to me.

Adam Dayan:

I mean, the first word that jumped into my mind was negligence, but now that you've

continued, it's worse than negligence.

Heather Deutsch:


But you have no...

We called them out on it and they denied it and then they corrected it, so it goes away.

Anyway, this packet is what's supposed to be distributed to all of the potential agencies,

and they literally open your packet, read about your child and see if it's the right fit for

their particular agency and if they can help you. So finally, when Philip was at the ETU within the first, maybe the third month, the agency that is currently helping us and where he is living, AHRC, agreed to take the case. And they found a residence for him in Queens down the block from the ETU. And again, I didn't want my son living in Queens, but again, I was being pushed up against a wall. I had to go visit. I went to visit.

I did not like what I saw, but was given no choice. Once again, everything was set within two weeks, Philip will move. Okay. And maybe day 10, we got a call. It's not structurally sound and it's not how he can't go there.

Adam Dayan:

There was a problem with the placement.

Heather Deutsch:

The physical structure was not structurally sound, which I knew, me, Nada, architect, not

in a surveyor or any of the, I knew that.

Once that happened, I said to the agency, it's, I want to find a place for Philip to live. And the woman agreed, Betsy, she agreed. And I just put out all my feelers to everybody I knew in my neighborhood, because obviously I want my son to live in the neighborhood.

He grew up. And we were blessed with a placement. Well, not a placement. I found a house for him six blocks away from where he grew up around the corner from the

school he attended his whole life. We were given special, special permission to go forward. It's the only new residence that's been open in 10, 12 years.

And as they were planning it, AHRC and furnishing it and painting it, I mean, it's brand new, they kept saying to me, you know, how did this happen?

How did this happen?

Why did this happen?

They couldn't believe it.

Adam Dayan:

You got special permission from OPWDD for Philip to live in this residence in Brooklyn

that you found on your own.

Heather Deutsch:


They created the residence.

It was a two, it's the first floor of a two family home.

I mean, there is no residence.

Now they created the program for him.

Adam Dayan:

It sounds like it's been quite a harrowing ordeal with many disappointments and frustrations along the way. Has there been any press coverage of your experience going through this process?

Heather Deutsch:

Not at all. I reached out to all of the local news stations and nobody responded to me.

One reporter from the New York Times was speaking to me consistently at one point about two years ago and nothing ever came to fruition with that either.

Adam Dayan:

What's the lesson for our listeners in all of this?

Heather Deutsch:

I think there are two lessons.

I think although I never could have seen or foreseen what ultimately happened to my son, as a parent of a special needs child, if you see signals, behaviors, things that are out

of the norm, I know instinctively it's just part of raising your child, but you have to

understand and only because I lived it, can I give this advice, our children are special.

Our children rarely will grow out in quotes of a behavior or anything that is not that

you see as presenting as who they are typically. When you see something that makes you think twice, whatever you need to do to address it and see it through must be done.

And in the bigger picture, you cannot ever think that someone else will take care or

advocate or make anything right for your child, but you must walk on water for your child. You cannot leave any stone unturned. You cannot hesitate or be reluctant to ask too many questions, to write too many emails, make too many phone calls.

You tell your story and you tell it to anyone who will listen because the only reason that

we're sitting here and I'm talking about this that I never ever thought is because I didn't

stop talking and I didn't stop moving and I never ever settled and accepted that this

is who Philip is. I knew that he would come back to us one day and he thank God did come back. The dream of him living in Brooklyn is an amazing, true, fantasy dream.

You must advocate for your child.

On any level, I mean, I teach parents all day long. If you don't tell the nursery school teacher that your child doesn't eat french fries, how is she supposed to know?

You must advocate, advocate, advocate.

Adam Dayan:

That's amazing and I'm so glad that it worked out for you in the end after all that you've been through.

Before we wrap up, is there anything else you'd like to share with our listeners?

Heather Deutsch:

I just, when you go through a hard time, it's very easy to get defeated and discouraged

and get overwhelmed. But when you have special children and you have a family of typical children as well, a husband, a wife, you do not have the luxury of saying I give up or I can't because it won't lead to any place productive or happy for anybody.

You have to be all in because your child is the only one that will suffer if you say

I can't.

Adam Dayan:

Heather, I want to thank you for being a great guest and sharing such valuable information with our listeners. I think your experience will be an important wake-up call for a lot of parents who are thinking about or need to be thinking about getting supports in place for their special needs children who are approaching adulthood.

You are a tireless advocate and your children are lucky to have you as a mom and I wish

you, Phillip and the rest of your family all the best in the future.

Heather Deutsch:

Thank you, Adam.

Adam Dayan:

Thank you.

Heather Deutsch:

And if anybody would like to reach out to me, I'm very happy to help anybody in any

way I can.

I could be reached at Heather Deutsch2 @ Gmail.

Heather D-E-U-T-S-C-H, the number two at Gmail.

Adam Dayan:

Very good.

That's a wrap.

Thank you so much.


Thanks for listening to Curious Incident.

A podcast for special needs families.

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This podcast provides general information which is not intended to and does not constitute legal advice. You should not rely on this information for any purpose.

For legal counsel, you should consult with an attorney to discuss your specific circumstances. You're listening to this podcast does not create an attorney-quiet relationship between you and the law offices of Adam Dayan, P-L-L-C.

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