Transcripts For WRC Dateline NBC 20150412

To face. Im terrified. And triumphs, too. A kettle. Yes. Is that milk or juice . Milk. A fight for their kids that none of us can afford for them to lose. All the time that people told us he would never, well, he is. All the things they said he cant and he wont, well, he can and he will. Lives on the brink. Good evening and welcome to dateline. Im lester holt. All parents want a Bright Future for their children. What if the one thing that would help them get there is taken away. Dateline has spent three years investigating what happens when young adults with certain special needs age out of the education system. They and their families pay a steep price. And just maybe, so do the rest of us. Here is kate snow. Reporter its Graduation Day in a new york suburb a rite of passage that normally brings excitement, a sense of accomplishment, and Endless Possibilities for the future. This is nickolas kubicsko. His journey to this date was long because he has autism, a Brain Development disorder that can impair communication and social interaction. His mom, lenore kubicsko, is unspeakably proud. You go boy, you go reporter at a private school 60 miles away in new york city, eric sadowsky, another young man with autism, is also graduating sharing goodbye hugs and wellwishes with friends and teachers. See you later man reporter his mother mary clancy is feeling emotional about her sons last day. I was just hoping i would not start crying in the classroom. Reporter graduation is when parents launch their children into the world eager to see what lies ahead. But for the families youll meet tonight, the joy they feel in this moment masks the terror and dread lurking just below the surface. I wake up every morning, drenched in sweat and worried about what am i going to do about eric. Reporter thats because when eric and nick leave school, they will lose the specialized help and structure theyve had for most of their lives. And theres no equivalent state or federal support required to take over. Parents of children with autism compare it to falling off a cliff. Happy graduation. Everything weve worked for, we are taking away, and you will leap off a cliff into nothingness. Right now the picture is nothingness, its black. Absolutely black. Reporter for the last three years, datelines cameras have chronicled the lives of these two families as they made this leap. I dont think ive ever been more terrified than i am right now. Reporter weve watched them struggle to find resources. Hes falling apart. Hes a mess. And i need help, and i need help like two months ago. You dont feel like you can do it this morning . Reporter and battle to build a future for their sons. Feels so good. Feel the air. Isnt that wonderful . Reporter our story starts long before their world turned upside down, on a warm summer evening in new york city where eric and mary are out on their weekly date. Not afraid, not afraid. Reporter over dinner, earthquake and his mother talk about his birthday. Youre a big guy. Reporter in a few months eric will turn 21, an age when people with disabilities are no longer eligible for help in the education system. Youre a big boy. Becoming a young man. Reporter it wasnt so long ago that eric was a little boy running around the apartment where he lived with mother, brother and sister. Beautiful toddler running up and down the hall, chasing our labrador retriever. He was such a loving child and so attached to me. Reporter but when he was about 18monthold, mary noticed eric only had a few words, and hed become repetitive playing an old cassette tape again and again. And so that was the first hint. The pediatrician then said, its time to get him looked at. I dont think he got a full diagnosis of autism until he was three. But by two and a half, we were on it and had started therapies. Reporter you knew. We knew. We knew. Reporter eric started going to Treatment Centers to help him develop language skills. Eric, do you want some bagel . Yes. Reporter mary was building a career as a professional artist, but she put those ambitions on hold to care for her son full time. Reporter did you miss it . Oh, i was heartsick. Reporter but then on the other hand, im sure you would do absolutely anything for your son. Of course. Thats what was happening. I cooperate say no to any possibility of help for him. You know, i just saw so much potential. I knew this kid had so much in him, that any help that he needed i we gave to him. Reporter the symptoms of autism are measured on a spectrum. Eric is roughly in the middle. There are many people who are far more challenged, like nickolas kubicsko. His story starts at home on new yorks long island, where he lives with his parents and sister. Nick doesnt speak, and spends large parts of his days watching disney movies, something his mom lenore says he does repetitively. Nick is watching his favorite scene in the whole world right now. The flavor of the month is 101 dalmatians. Its a few seconds long when he actually lets the scene play, he watched it straight for four hours. Reporter and nick has another common autistic trait, severe obsessive compulsive disorder. Reporter i saw him walking through a room. And he walked only on the edge of the room. Hes developed a very, we call it, choreography. It can take him two hours sometimes to cross a room. Its painful to watch. Reporter nick needs individual attention thats hard to provide in a classroom. So his local School District sends aides to work with him oneonone at home. But like eric, nicks 21st birthday is around the corner. Theyll both abruptly lose the services that have helped them come so far. Is it cruel to offer something and then have it taken away . But its even crueler not to offer it in the first place. And i dont know what the answer is. And in 40 some odd weeks from now, were gonna find out. Reporter the burden of caring for eric and nick will fall almost entirely on their families, especially on their mothers, and youre about to see what happens as they prepare for that life changing moment. Coming up, in a sign of just how much progress nick has made, his family is able to take him to his favorite place on earth, disney world. Its a cause for celebration because hes come such a long way. But will nick and erics progress continue without help . Without purposeful things to do, he will fall back into the autism world. Hes so much happier out of it. Ive been drivin a lincoln since. Long before anybody paid me to drive one. I didnt do it to be cool. I didnt do it to make a statement. I just liked it. Anncr lease an mkc for 349 a month plus competitive owners and lessees get 500 bonus cash, only at your lincoln dealer. Ziploc presents cafeteria chaos. School lunch can be difficult part of every kids day. One little struggle in the cafeteria. Can lead to one. Monumental. Mishap. Not with new ziploc easy open tabs. Because life needs ziploc. Sc johnson. A family company. You dont have to buy the new Samsung Galaxy s 6. Sprint will just give you one for free. Seriously. After a year, give it back and well give you a brand new phone. And every year after that. Get the galaxy s 6 for free. When you sign up for the new unlimited plus plan. Only from sprint. Relay for life. Help the American Cancer Society finish the fight. Donate now at relay. Org i came up with so many reasons to put off losing weight. But then i joined weight watchers, got the starter kit and i was like, hey, i can do this. Now theres Nothing Holding me back, i can feel it. Once you get started nothing can stop you. Join for free at weightwatchers. Com, and get a free starter kit when you sign up before april 27th. Nestled away in northern california, in the quaint town of petaluma youll find a locally owned restaurant where people come together for a great sandwich. Fresh grilled egg whites melted white cheddar all on a toasted muffin. b ut if you dont live near petaluma the good news is you could probably find one of these restaurants right around the corner. 250 calorie egg white delight. alt 250 calorie egg white delight mcmuffin lovin is local im not finding anything appropriate for him yet. Reporter eric sadowskys parents are sitting in an emergency meeting with the principal at his school. What are the options for him for next year . Reporter erics not in trouble. He has autism. By law, he must leave school when he turns 21 in a few months. But his dad, richard sadowsky, says erics not done learning and he and mary are in a panic about what eric will do next. To abruptly end his time here is not a good idea for him. Reporter eric has been a student at the Rebecca School for the past five years. Its a private school dedicated to providing specialized support like speech and Occupational Therapy to children with Developmental Disabilities. Its a place where hes understood and hes cared about. He loves the teachers. Hes very, very attached to them. The Rebecca School is like a family to him. Reporter its expensive too, 100,000 a year. After some costly legal wrangling, erics parents got the public School District to pick up the tab. Thats because federal law says states are obligated to educate children through high school. For those with special needs, that usually means up to age 21. Ready, set go without purposeful things to do, he will fall back into the autism world, into his own inner world. Hes so much happier out of it. But thats where his brain takes him. Its hard. I really need these people and i cant have them anymore. Reporter as an adult, eric will be eligible for social security. And hell be able to apply for services funded by medicaid. But his parents have been warned that those programs will not be tailored to autism or build on the skills eric has mastered at the Rebecca School. We just cant cut off educating and teaching and supporting people when they age out of their school program. Reporter linda walder is the executive director of the daniel jordan fiddle foundation, a nonprofit thinktank devoted to studying the issues around adults with autism. Tism prevalence rates have more than doubled over the last decade, she says an estimated half a million young people with autism will age out in the next ten years. And its a tsunami of children who are aging to adult life. Do you stop having autism when you turn 21 . That is one of the general misconceptions about autism is that it only affects children. You dont outgrow autism . You do not outgrow autism. Look, were gonna play catch reporter the clock is ticking on nicholas kubicskos services, too. He has just months left before he turns 21 and loses access to resources his mother says have changed his life and hers. Ill never give up on nick. I knew there was more to him. I knew that he was trying. When we supported him at home, i kept getting glimpses. I knew where that young man was. Reporter finding a way to reach nick has been a challenge. He used to live in a 24 hour residential treatment center. But lenore says the staff had trouble with nicks obsessive behavior. It was torture for him to have someone try to intervene and rush him or prevent him from doing something. And what did that lead to . Initially protesting. And it eventually evolved into him becoming very, very selfdestructive, property destruction. And he would he began to attack people. He began to lash out. Reporter lenore says they had no choice but to bring him home. Its a lot for the family, but i know a lot of it fell on you. Moms do what moms got to do. We do what we have to do. Reporter now, their public School District provides aides to help lenore in the home and sends a teacher to work with nick for two hours every day. Ready what is . What is this . You know reporter the teacher helps him communicate using a device that generates speech. Pepper. Yes, two more. Give me two more on this page, okay . You really need more than one person to teach nick. I need a break. Yeah, you can take a break. Go ahead. When you have someone at his elbow to keep him calm and keep him focused, it does work. Reporter with this individualized approach, nicks aggression has nearly disappeared. Hes started venturing out of the house, taking trips to a local bagel shop, even the grocery store. Hes made so much progress that his family decides to take their first vacation in seven years. The destination . Nicks favorite place on earth. Nick, were in disney this is a big deal. Its a big deal for our whole family. We all want to go home and talk about it. Reporter nicks older sister tasha says shes proud of her brother. Its a cause for celebration because hes come such a long way. And hes as typical as i would love for him to be. Reporter even as nicks confidence is growing, he may not know whats about to happen when he turns 21. His family knows and cant help but worry. What are you most afraid of . Pulling that plug. His world is going to collapse. Everything that weve spent the hours, the dollars is about to go down the drain. Reporter in erics case, hes very aware that change is coming. He even talks about leaving the Rebecca School with one of his aides. So you dont want to have a Graduation Party this year . Not yet. Wait until youre 25. Okay. Hes really under stress. He has a fantasy about taking all of the girls that hes loved all on a trip where they go away together. And he was going to have this be when he was 21 and he got so frightened of 21 that he moved it to 25. You dont want to have graduation for five more years . No, not yet. You have five more years of school this is him organizing his future. Youre going to stay at the Rebecca School for five years . Yes. Are you really . Yes. Is this pretend or real . Real. From what you can tell, what does he know . s hes pretty upset about leaving Rebecca School and leaving his friends. And i dont have anything positive to tell him about whats coming up. Graduating Nickolas Joseph kubicsko. To an uncertain future. Hes come so far. Thats crazy. When dateline continues. [ laughing ] want to play hide and seek . Yeah 1. 2. 6. 10 [ female announcer ] pina colada yoplait. It is so good when you need a little escape. [ mom ] still counting. If you run over somebody its usually because you were driving too fast or you didnt look before you turned or you didnt stop for someone in the crosswalk. Always be alert. Reporter turning 21 is a Pivotal Moment in the life of a person with disabilities. Before special education students like nick graduate, federal law says they must have something called a transition plan created by their School District. Its supposed to be a set of measurable goals designed to prepare young people for adult life. But nicks mom, lenore, hasnt received anything. So she and her husband mike call the School Superintendent to complain. I have no transition plan. And the clock is ticking which is why i said to you, im fearful that were just delaying and delaying here and nickolass needs are not being met. Reporter dateline found nicks case isnt unique. According to our analysis of the most recent u. S. Department of education data, only a handful of states are consistently making transition plans for all special education students. Up to now, the department of education has been the sole Agency Responsible for eric and nick. But when they graduate, their families will have to navigate a jumbled patchwork of state and federal programs. Good job, nick. Excellent holding it together, bud. Reporter lenore begins making frantic calls herself trying to get nick hooked up with an agency that could provide him with adult services. And now we wait til monday. We put that on the list of things to do. Here we are right on the brink. And i didnt know how to make it gel. The whole system just didnt make any sense at all. And theres no instruction manual, right . No. It depended on who you got on the other end of the phone. I remember making cold calls to 30 agencies and just taking notes like crazy. I look back at the notes and im like, my god, it was chaos. Youre doing all right. Reporter there is one particular program lenore has ben desperate to get nick enrolled in before he aged out known as self determination. The government would allocate a certain amount of money for nick and let his family pick and choose how to spend it on services for him at home. But with graduation just a few weeks away, lenore finds out hes been wait listed. He has no program to transition to. Because the funding is not there, and he is stuck on a waiting list. Ok thanks, bye bye. Reporter erics mother mary is deeply concerned about her sons transition too. Shes been looking for adult programs for him for years. My short list of things that i thought probably would come through, im working my way through them, and im getting a lot of shut doors. Reporter marys finding there are few options for adults and even fewer options for adults with autism. I had wanted to put him at one of the local ys. They said they had a special needs program. It turns out now they only go to 14. This is a phrase i hear from agency, program, center, all the time. Reporter on the day after his 21st birthday, eric walks into school for the last time. Bye eric no, sabrina. Youre not done yet wait until 2016. Thats so far away right now were in 2012. Its really tough. I wish we had more of a plan for eric. Reporter joshua rich, erics even more difficult because eric is the First Student to age out of the Rebecca School. Weve brought him so far and then were leaving him in uncertain position, which is really upsetting. Heres your artwork. Want to put that in your backpack . Reporter eric wants a quiet ending. No Graduation Ceremony, no party, no celebrations. Erics principal, tina mccourt, says his departure is tough on everyone. Purchase. Catch you later, man. I know the students are feeling it, and i know the staff is. I feel very much like a mother hen for all the students here. For eric, im so proud of him. Hes come so far. But its concerning that hes not going to some place thats gonna be supportive and meet his needs and allow him to move ahead. I feel worried about him. So that makes it harder to see him go. Time to go home everybody should give these kids and these adults a chance because what they bring to the table. Its really amazing. They have so much to add. Bye, tina. Can i give you a hug . Would that be ok . Goodbye. Alright, eric ill see you, man. Reporter eric gets on the school bus for the very last time, headed toward an uncertain future. While erics transition was deliberately unceremonious, nicks is much more of a celebration. Were going to graduation . Although nick hasnt been in a regular classroom for most of his life, hes participating in the School Districts Graduation Ceremony at his parents request. His teacher Holly Stovall along with his sister tasha support him as he receives his diploma. Just a few years ago, a crowd like this would have been overwhelming and stressful for nick. Nickolas joseph kubicsko. [ cheers and applause ] ladies and gentlemen, lets hear it for the class of 2013. You go boy, you go when he had that gown on, he was proud of himself. He had a smirk. He held himself a little high. Sitting at graduation he showed everybody, you all thought i couldnt . I sat here. And look it i walked the stage myself. And i did it. And he did. Reporter the celebration will be shortlived. Nick and eric are about to find out that their immediate future are chaotic and threaten to undo a lifetime of learning. Hes come so far in these couple of months. And then tomorrow it just ends . Like that just is mind boggling for me. Thats crazy. Its a shame for nick. Starting tomorrow, hes stuck in the house. And its not fair to him. Coming up raise an autistic child, you cant do it without help. But what kind of help is out there . We take our hidden cameras inside a dayhab. They are just sitting in storage, sitting in a room. Nothing will keep you from magnum double caramel. Silky vanilla bean ice cream and rich caramel sauce all covered in thick chocolate. Magnum, the only ice cream bar made with belgian chocolate. Lets play who won lunch. Kinda busy. I got kfcs new barbeque chicken rice bowl. Hand pulled honey barbeque chicken and rice, cheese, cookie drink 5 bucks you got me beat i guess. Or you dont because i got a texmex chicken and rice bowl. Crispy chicken and fresh pico de gallo. We tied. Who are we going to make fun of . Gary. Hey gary, wanna play who won lunch . I dont think gary wants to play. Ive been there gar. Introducing new flonase allergy relief nasal spray. This changes everything. New flonase outperforms a leading allergy pill so you will inhale life. When we breathe in allergens our bodies react by overproducing six key inflammatory substances that cause our symptoms. Most allergy pills only control one substance, flonase controls six. And six is greater than one. So roll down your windows, hug your pet dust off some memories, make new ones. New flonase. Six is greather than one. This changes everything. Good journalism is about telling a story from more than one perspective. Embracing diversity can enrich your story by allowing you to see things from more than just one point of view. Thats a story worth telling. The more you know. Reporter a month after nicks graduation, his mom lenore is flipping through his appointment calendar. Its where she keeps track of his meetings with teachers and other caregivers, and its empty. Theres nothing to write. Theres nobody coming. Lenore is on her own. Reporter what are those first weeks like . I remember pulling the shades, turning on the air conditioner and saying, ok buddy, its just me and you. Reporter as the weeks went on, lenore says she watched her son regress before her eyes. His personality dimmed. His willingness to interact dimmed. Because theres less practice. Theres less to do. Theres less opportunity. Its like its literally dimming the lights. Reporter nick has been on a waiting list for government money to pay for the athome services his mom really wants. But theres a catch, even if the funding comes through, the state requires anyone receiving services to have a social worker, and lenore cant find one. Ok. When youre ready. Reporter lenore has taken nick for interviews at a number of agencies that provide social workers, but none of them have agreed to take his case. To raise an autistic child you almost, you cant you cant do it without the help. And right now, i dont know how were going to do it. I dont know what kind of life hes going to have, because were looking at a really barren landscape for him. I dont think ive ever been more terrified than i am right now. Reporter autism advocate linda walder says Government Programs arent designed for adults with autism. The system is really broken. Its dated. Its not addressing the needs of adults and the growing population of adults living with autism. Reporter its not addressing the reality we have now. Its not addressing todays reality. Reporter without appropriate jobs or housing, adults with autism have higher rates of unemployment than individuals with other disabilities. You dont feel like you can do it this morning . Reporter and 80 percent under age 30 live at home, which is what eric is doing now that hes turned 21 and aged out of the Rebecca School where he had constant support. Reporter does 21 seem arbitrary to you . For these kids, its terribly arbitrary. I understand that the state has to have some limits. They cant support people forever, but this is no solution. Reporter mary wonders if all the money spent educating eric will have been a waste if she cant find something productive for him to do now. This is what erics day is like since aging out, little structure, hanging around the apartment with nothing to do and nowhere to go. Suddenly it hit us that were into the rest of our lives. And thats been a big change and a frightening one. Reporter with no more teachers and friends to stimulate his language skills, eric is already losing some of the speech he gained in school. So she cant sit in a sofa. Circle. Sofa or circle . Circle. So he so she cant sit in a circle. Hes sleeping 12, 13 hours. Kind of drifting in and out of his room, singing to himself a lot. Talking to himself a lot. Really regressing into his own world, a lot of withdrawal. Reporter erics mother has explored free day programs offered by the state known as dayhabs. She doesnt like what she has seen. Reporter what did you see . I saw rooms full of people with their heads on the tables, wandering around, just being in storage. Theyre just sitting in a room. Reporter dateline took hidden cameras into some of the day programs to see for ourselves. We said we were looking for a program for someone with autism who was aging out. This is what we saw, at one a group of adults gathered in a room doing very little. At another, people with special needs are working, gluing strips of rubber to metal. A staff member tells us they spend most of their day in this room. The hours are from 8 30 to 3 00. They have a break from 10 30 to 10 40 which is a coffee break. And then they have a lunch break from 12 30 to 1 00. Reporter and outside the facility, theres barbed wire. Safety reasons. And the thing is there are often huge waitlists to get into dayhabs like these. Somebody who works for the state told me not to look at the state programs because they are terrible. Reporter that speaks volumes. That someone in the state system would say, dont come here. Yeah. She said, honestly theyre all horrible. Reporter new york state says its helping more and more people with Developmental Disabilities lead increasingly independent lives. It says its in the process of shutting down sheltered workshops and trying to help people find jobs. Ruth can sing a Peanut Butter sandwich made with jam. I had always thought when he got older, i had this vague idea that he would have some kind of a job and that it would be over. And i am only adjusting now over the last two years in this transition period to understand that its never going to be over. As long as im alive, i will be caring for eric. Reporter being a champion for someone who has a Developmental Disability can be draining. Studies show a higher incidence of depression among parents and caregivers. Six months after erics graduation, mary is struggling. Reporter it must be so hard. It is exhausting. The biggest thing that hurts for me is loneliness and isolation. Its very, very hard. But i absolutely love this boy. Reporter mary is feeling desperate and starts to think one of those dayhabs might be better than nothing so she sends in an application. I still wake up every single morning in a panic and worry about what im going to do about eric. Eric needs to get outside. Lie at the future and that feels so hopeless. Mommy. Both families are watching their sons slip away, discovering they have to make compromises. But as difficult as things seem, one family is about to discover things could be even worse. We have nice weather. That is about the level of service that we have here. We always tell people, dont move here. Coming up, hope. The team that comes to help him, helps me do better for him, and heartbreak. Reporter what does it mean to the family . Itll be long distance. Reporter when dateline continues. The nissan rogue with safety shield technologies. The only thing left to fear is you imagination. Nissan. Innovation that excites. Im always talking with my hands so they have to look their best. Revlon colorstay gel envy ™ a revolution in modern nail enamel. Now, in just two steps, i get what i want. First, our base coat and vivid color in one. Second, our revolutionary diamond top coat forms a protective coating. For glasslike shine superior strength and gorgeous, liferesistant wear dont be envious. Be envied in 30 easytoremove shades to love. Revlon. Love is on. Hold it come with me. New dannon oikos triple zero is my go to protein snack. Cam, protein from yogurt . Yup, this greek nonfat yogurt packs 15 grams of protein punch. But what else . Unlike some other protein snacks, it has 0 added sugar 0 artificial sweeteners and 0 fat. Mmm. Will it up my game . No man new dannon oikos triple zero official yogurt of the nfl. Mmm dannon. You wish your dog could fight off fleas and ticks. But since he cant. You rely on frontline plus. Because frontline plus unleashes a deadly killing force to kill fleas and ticks, plus flea eggs and larvae, preventing a new infestation. Its protection lasts a full 30 days. No wonder frontline plus is the 1 choice of vets for their pets and yours. After all, your dog is a lover not a fighter. Frontline plus. The vets 1 choice. Know you can keep your financial big picture under control. Know you can see how much you have to spend and whether you should transfer funds. Know you can easily keep track of what youre putting away. And know youre budgeted for the great escape. Thanks to virtual wallet by pnc. Reporter after watching her luego de ver a su hijo eric son eric sink further into his own world, bored and lonely, with nothing to get him out of bed, mary digs deep. I kind of snapped out of my own depression and came to a realization that if i didnt do something, eric is just going to stay the way he was. Reporter so mary, who was once a professional artist, becomes her sons teacher. So i built a binder for him. I built lessons. I put together a daily plan for him. This is how it is set up for adults, you graduate and all education stops. And eric is nowhere near finished with his education. Reporter erics parents are also paying out of pocket for activities to get him out of the house. He has a gym membership, a Music Therapy class, and a companion to take him places. But it all comes at a staggering cost. Do you have any idea how much money youve spent on care for eric . Probably our least expensive year has been about 40,000. And the higher ones have been around 90. Reporter 90,000 dollars . For a year . Yeah. We havent been able to save any money. We dont have any retirement. But its kind of like when people ask me, how much does it cost to raise a kid with autism . Everything youve got. Reporter for nick, theres some good news. His mom finds a social worker to take his case. After three months on the wait list, hes approved for that selfdetermination program. Lenore now has state medicaid money to hire a support team for nick, including some familiar faces like his former teacher, holly. The team that comes to help him helps me do better for him. Because when theyre here, they meet his needs. Reporter you can breathe. They carry him. And i get to sit back as mom and go, you go guy. Like, look you can do it. I dont know whats bothering you today. Reporter and heres something that may seem odd that makes nicks mom proud, hes crying. Expressing emotion like this has always been a challenge for him. So when he cries, theres a little happy dance goin on from my side, because he didnt do it before. He does it now which means i bet theres a lot more that he didnt do before thats gonna happen. And were ready. Reporter but lenore cant sit back for long, theres another unexpected change. Your husbands job is shifting to florida. Yeah. Yeah. Reporter why the deep intake of breath . Cause thats a big scary thing. Thats a big scary thing. Reporter with lenore working only part time, the family relies on her husband mikes income. So they decide to take a scouting trip to florida to find out if nick can get the same kind of support there. We went to medicaid. We went to providers down there and asked the questions. Reporter dateline is with lenore on her visit to florida agencies where employees are incredibly candid about how little they have to offer. They allow their conversations with lenore to be recorded. How immediately do you need those services . We have quite a long waiting list. Can you give me a hint . Is it like weeks . Like 22,000 people on the waiting list. Okay. Thats a big reality check. Are you gonna have those guaranteed services from new york to here . No, youre not. No. And i would be lying to you if i told you you would. We always say, if theres a way that he can remain there then you are, you know, youre really trading in a lot for nothing. We have nice weather. That is about the level of service that we have here. We always tell people, dont move here. Reporter we later asked Florida State officials for comment. They say over the past two years, the state has approved more funding to help get people off the waitlist. How is it possible that things are so different from one state to another . The Funding Source is medicaid. Medicaid is a state federal partnership. Reporter sharon lewis is a Senior Advisor on disability policy for the u. S. Government. She explains that states decide how to spend federal money for adults with autism. Theres no minimum requirement in terms of how many people youre gonna serve, how much money youre going to spend on this. Its a state decision. Reporter so the federal government cant say to florida, youve gotta do the same thing. At this point under the law, no. Reporter whats more, lewis says states split their medicaid dollars between the poor and people with disabilities. She says it all adds up to a system that cant take that much weight. I think that the programs are overstressed with the numbers. I mean its why we see wait lists. Reporter is that the bottom line, we just dont have the budgets . We have not addressed the need for Longterm Services and support in this country. Reporter and lewis says she understands fighting for the resources that do exist is hard on families. She says the federal government is implementing a fiveyear plan to better coordinate services for adults with disabilities. Doesnt it seem a little unfair that the families have to become super advocates . It is. It is unfair. When we see individuals with autism who are the most successful, theyre coming from families who have high expectations. Theyre the parents who are sitting on the phone for hours. Back in new york, nicks family decides hes better off staying put. So they make a difficult decision. They are breaking up the family. Mike will move to florida for his job alone. What does it mean to the family . Itll be long distance. And it leaves nick and my daughter and i here to try to figure out how were going to be three quarters of a family and keep dad connected. Reporter and erics family is also settling for a situation thats not perfect but better than him sitting at home. Six months after he graduated from the Rebecca School, eric starts attending a dayhab in manhattan where he does volunteer work. Its simple things like setting tables, delivering mail. They even have dog walking, delivering meals to the elderly. Lets get to work everybody. Erics doing excellent job working. While they dont do that much, its better than most and he has a mix of young people to be with, and he has friends. Reporter but what eric and his mom dont know is that theres something even better right around the corner. Coming up, a little light at the end of a long tunnel. He is really a gifted artist. And i see really good things coming out of this. Its not over. Its not a done deal. See the individual. Nestled away in northern california, in the quaint town of petaluma youll find a locally owned restaurant where people come together for a great sandwich. Fresh grilled egg whites melted white cheddar all on a toasted muffin. b ut if you dont live near petaluma the good news is you could probably find one of these restaurants right around the corner. 250 calorie egg white delight. alt 250 calorie egg white delight mcmuffin lovin is local relay for life. Help the American Cancer Society finish the fight. Donate now at relay. Org you dont have to buy the new Samsung Galaxy s 6. Sprint will just give you one for free. Seriously. After a year, give it back and well give you a brand new phone. And every year after that. Get the galaxy s 6 for free. When you sign up for the new unlimited plus plan. Only from sprint. This is the equivalent of the sugar in one regular soda. And this is one soda a day over an average adult lifetime. But theres a better choice. Drink more brita water. Clean, refreshing, brita. Girls giggling girl hes so cute. What should we name him . mixed gasps snorting new pet . Get scrubbing bubbles. Kill 99. 9 of germs and destroy grime. With scrubbing bubbles for 100 problem solved. I came up with so many reasons to put off losing weight. But then i joined weight watchers, got the starter kit and i was like, hey, i can do this. Now theres Nothing Holding me back, i can feel it. Once you get started nothing can stop you. Join for free at weightwatchers. Com, and get a free starter kit when you sign up before april 27th. Ford is taking the ecoboost challenge all across america. Here we go check out escape and find out why ford is the brand more people buy and buy again. Wow thats a fourcylinder . I thought it was a six. I definitely feel the ecoboost in the ford escape. Thats like a sports car. I just opened my trunk with my foot. I prefer, without a doubt, the escape over the crv. Take the ecoboost challenge at your ford dealer. For a limitedtime get an escape with up to twothousand total cash back plus sevenfifty conquest cash with a qualifying competitive vehicle in your house. Reporter for the last three years, mary and lenore have carried their sons through an unstable, scary transition. Theyve fought for every bit of help they could find. And they have tried their best to give their sons the support they lost when they turned 21. Nick has had an especially bumpy road. After depending solely on his mom for months, he finally got help in the form of a state funded program that sends aides to his home. Then, his family had to break up in order to keep his services. And last october, another change. He abruptly loses some of his services again. Our experience when he graduated was falling off a cliff. I said to my husband this was the equivalent of getting pushed off a cliff. Reporter heres why, new york state agencies put new conditions on how government funding can be used to pay for programs like nicks. He loses valuable members of his team overnight and quickly spins out of control. Hes falling apart. Hes a mess. And i need help and i need help like two months ago. Reporter after an episode of extreme anxiety leaves nick hospitalized, lenore calls an agency that provides services for nick, begging for help. Lenore feels like once again, shes on her own. Thats all i can do is hope and keep my fingers crossed. And work with him minute by minute. Minute by minute. Some days are truly mi minute. Youre thinking about the shawnee hotel, yes . Yeah. Reporter after months of lobbying state administrators and looking for loopholes, she manages to piece back together some of nicks support team. Over muffins and coffee one recent weekend, lenore brings them back up to speed on nick. We know now hes not wrong, hes just him. But he needs supports from us to be ok with being him. Reporter lenore knows nick will always need a lot of help. But she also knows he can still participate in his community. We join nick and his team members as they recycle bottles and cans that nick collects. Wow. 1. 25, 1. 45, 25, 35, im not great with math. Thats about three dollars . Right. Reporter nick donates the charity make a wish. He had make a wish a number of years ago, and that was life changing for him. Oh, thank you so much not everybody works a paying job, but that doesnt mean they dont contribute to their community. For all your hard work. And right now were teaching him how to do that with something a simple as collecting bottles and passing the money on to charity. Reporter for eric, the period of isolation and stagnation he went through after leaving the Rebecca School is coming to an end. Mommy, and ill be right back. Reporter hes recently learned a new skill, hes taking the subway by himself, a big step on the path to becoming more independent. What are you going to do this weekend . Reporter and instead of weekly dinner dates with his mom, eric meets with a language coach his own age paid for by his parents. And their conversation sounds like any other dinner date. Thank you for asking good morning, pam good morning how are you today . Reporter but the best news is erics mom has traded the dayhab for something even better. Eric has been chosen for a selective art program for adults with Developmental Disabilities. Its called pure vision arts and run by the shield institute, a nonprofit organization. Eric shows us some of his artwork. And is that milk or juice . Milk reporter breakfast eric has also displayed his work in several art exhibits around new york city. At his first show, old friends come to celebrate with him. His mother, whos finally finding time to get back to her own artwork is thrilled. And one snowy morning this february, mary and eric go to one of the biggest public art fairs in new york city. Im really really proud of you. This is a big show. Its really special. Reporter his art is on the walls, and its for sale. Im very proud of you. He is really a gifted artist. And i see really good things coming out of this. Im so pleased. I just think, you know, he does have a chance at a life away from me. This is a new beginning for him. Reporter for lenore, she says its hard to imagine a day when she wont be managing her sons life. And she knows when that day comes, the responsibility will fall to nicks sister. What happens when youre not there for him anymore . I am terrified for him and my daughter. I pray that they find people in their lives to help them through that and find a way to make that as easy as we can for both of them. Reporter both moms have spent a lifetime helping their sons find their voices. Now they want every voice to be heard. Its not going to get any better until parents get together and force change. Its the most important thing you can do for your kid. All the times that people told us he would never, well, he is. All the things that they said, well, he cant and he wont. Well, they can and he will and he does and he is. Its not over. Its not a done deal. See the individual. Thats all for this edition of dateline. Well see you again thursday at 10 00, 9 00 central. Im lester holt. For all of us at nbc news, good night. Pilate truth . What is truth . [ breathing heavily ] caiaphas many here have seen you employ demons to heal and call it the work of god [ indistinct shouting ] [ shouting stops ] many heard you say you would destroy the temple and in three days build another