Nick and their extraordinary mothers. Moms do what moms have got to do. Trials no family should have to face. I dont think i have ever been more terrified than i am right now. And triumphs, too. Is that a kettle . Yes. Milk or juice . Milk. A fight for their kids that none of us can afford them to lose. All the times people told us he would never. Well, he is. All of the things they said he cant and he wont. Well, he can and he will. Lives on the brink. Good evening, welcome to dateline. Im lester holt. All parents want a Bright Future for their children. What if the one thing that will help them get there is taken away. Dateline 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. Heres 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 possibilitiefor the future. This is nicholas kabiskow, his journey to this day was long. Nick has autism. A Brain Development disorder that impairs communication and social interaction. Proud. At a private school, 60 miles away in new york city, eric sidowski, a man with autism is graduating sharing goodbye hugs and wellwishes with friend and teachers. His mother, mary clancy, is feeling emotional about her i was just hoping i would not start crying in the classroom. Parents launch their children into the world, eager to see what lies ahead. But for the families you will 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 when eric and nick leave school, they will lose the specialized help and structure they have had for most of their lives. And there is 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 that we worked for, we are taking it away. And you will leap off the cliff into nothingness. Right now the picture its nothingness. It is black. Absolutely black. Reporter for the last three years, datelines cameras chronicled the lives of the two families as they made this leap. I dont think i have ever been more terrified than i am reporter we have watched them struggle to find resources. He is falling apart. He is a mess. I need help. I need help like two months ago. You dont feel look you can do it this morning . Reporter and battle to build a future for their sons. This feels so good. Feel the air. Isnt it wonderful . Reporter our story starts long before their worlds 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 of rain. Reporter over dinner eric and his mother talk about his upcoming birthday. You are a big guy. Reporter in a few months eric will turn 21. The age when people with disabilities are no longer eligible for help through the education system. You are a big boy. Really becoming a young man. Going to be a young man. A young man. Reporter it wasnt so long ago that eric was a little boy, where he lives with his mother, father and sister. He was a beautiful toddler. Running up and down the halls, chasing our labrador retriever. He was such a loving child. And so attached to me. Reporter when he was about 18 months old, mary noticed eric only had a few words. And he had become repetitive playing an old cassette tape again and again. So that was the first hint the pediatrician then said it is time to get him looked at. I dont think he got a full diagnosis of autism until he was 3. By 2 1 2 we were on it and had started therapies. We knew. We knew. Reporter eric started going to Treatment Centers to help him develop language skills. Eric. Do you want some bagel . Bagel. Reporter mary was building a career as a professional artist. Hold to care for her son full time. I was heartsick. Reporter on the other hand im sure you would do absolutely anything for your son . Of course. I couldnt say no to any possibility of help for him. I just saw so much potential. I just saw so much in him that to him. Autism are measured on a spectrum. Eric is roughly in the middle. There are many people who are far more challenged like nick kabiskow. 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 lenore says he does repetitively. Scene in the whole world right now. The flavor of the month is 101 dalmatians. A few seconds long when he lets the scene play. He watches it for four hours. Reporter nick has a common trait, severe obsessive compulsive disorder. I watched him walk in a room he walked on the edge of the room. He developed a very we call it choreography. It could take two hours to cross a room. Its painful to watch. Reporter nick needs individual attention 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 they will both abruptly lose the services that have helped them come so far. Something and have it taken away . But it seemed crueller not to offer it in the first place, and i dont know what the answer is. And, and 40some weeks were going to find out. The burden for caring for entirely on their families, especially on their mothers. You are about to see what happens as they prepare for that lifechanging 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 he has 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 hes so much happier out of it. Im not finding anything eric sidowskis parents are sitting in an emergency meeting with the principal at his school. What are the options for him next year . Eric is not in trouble. He has autism. By law he must leave school when he turns 21 in a few months. Erics dad says he is not done learning and he and mary are in a panic about what he will do next. To abruptly end his time here is not a good thing. Eric has been a student at the Rebecca School for the past five years. A private school dedicated to providing specialized support like speech and Occupational Therapy to children with developmental disabilities. It is a place where he is understood. And he is cared about. He loves the teachers. He is 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. , that usually means up to age 21. Without purposeful things to do, he will fall back into the autism world into his own inner world. He is 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 he will 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, teaching, supporting people when they age out of their school program. Jordan daniel fiddle foundation, a nonprofit thinktank dedicated with autism. Because autism prevalence rates have doubled, half a million young people with autism will age out in the next ten years. It is a tsunami of children aging to adult life. Do you stop having autism when you turn 21 . Thats one of the general misconceptions about autism. It only affects children. You do not outgrow autism. You do not outgrow autism. The clock is ticking on nicolas services, too, and has a month left until he turns 21 and loses access to resources his mother says have changed his life and hers. I always knew there was more to i knew he was trying. When we supported him at home. I kept getting glimpses. Reporter finding a way to reach nick is a challenge. He used to live in a 24hour residential treatment center. Lenore said they had trouble with his behavior. Its horrible to have them rush him and prevent him from doing something. What did that lead to . Initially, protesting. And it eventually evolved into him becoming very, very selfdestructive. Property destruction. He and he would begin to attack people. He began to lash out. Reporter lenore says they had no choice to bring him home. Reporter a lot for the family. But a lot fell on you. Moms do what moms got to do. We do what we have to do. Reporter now their public School District provides aide to help lenore in the home and send a teacher to work with nick for two hours every day. What is this . You know it, yeah . Reporter the teacher helps him communicate using a device that generates speech. Yes, give me two more on this page, okay. You really need more than one person to teach nick. I need a break. You can take a break. When you have some one at his elbow to keep him calm and keep him focused, it does work. Reporter with this individualized approach, nicks aggression has nearly disappeared. He started venturing out of the house, taking trips to a local bagel shop, even the grocery store. He has made so much progress, that his family decide to take their first vacation in seven years. The destination, nicks favorite place on earth. Nick were in disney this is a big deal. A big deal for our whole family. We all want to go home and talk about it. Reporter nicks older sister tasha says she is proud of her brother. It is a cause for celebration 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 we have spent the hours the dollars is about to go down the drain. Reporter in erics case he is very aware that change is coming. He even talks about leaving the Rebecca School with one of his aide. You dent want to have your Graduation Party this year . Not yet. Wait until you are 25. Okay. He is really under stress. He has a fantasy about taking all of the girls that he has loved, all on a trip where they go away together. And he was going to have this be when he was 21. He got so frightened of 21 that he moved it to 25. You dont want to have graduation for five more years . Nope. Not yet. You have five more years of school. This is him organizing his future. You are going to stay at the Rebecca School for five years . Yes. Are you really . Yes. Is this pretend or real . Real. Uhhuh. From what you can tell, what does he know . Hes pretty upset about leaving Rebecca School and leaving his friend. And i dont have anything positive to tell him about whats coming up. Graduating. Nicholas joseph kowbisko. He has come so far and thats when dateline continues. 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. Though she and her husband mike to complain. I have no transition plan. And the clock is ticking, which is why i said to you that im fearful that we are just delaying and delaying here and nicholas needs are not being met. Nicks case is not unique. According to our analysis of the u. S. Department of education 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. When they graduate, their families will have to navigate a jumbled patchwork of state and federal programs. Good job, nick. Excellent doing it together. Reporter lenore begins making frantic calls to get nick hooked up with an agency that here we are right on the brink gel the whole system didnt make any sense at all. Reporter there is no instruction manual, right . Depending on who you got on the other side of the fall. I have cold calls to 30 agencies just taking notes like crazy. I look back at the notes. Im like, my god, it was chaos. How are you doing, all right . Particular program lenore has been desperate to get nick enrolled in before he got out, known as selfallocation, the government would allot money for nick and pick and choose for with graduation a few weeks away, lenore find out he has been wait listed. Transition to because the funding is not there and he is stuck on a waiting list. Reporter erics mother mary is deeply concerned about her sons transition, too. She has been looking for Adult Program for him for years. A short list of things i thought probably would come through. Im working my way through them. Im getting a lot of shut doors. Reporter mary is 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 and it turns out 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. Sabrina, not done yet. Wait until 2016. Thats so far away. Right now we are in 2012. It is really tough. I wish we had more of a plan for eric. Reporter joshua rich, erics head teacher, says the day is more difficult because eric is the first to age out of the Rebecca School. We have brought him so far. We are leaving him at an uncertain position. Its really upsetting. Here is your art work. Ending. No graduation ceremony, no party, no celebrations. Erics principal tina mccord says his departure is tough on everyone. Check you later, man. I think the students are definitely feeling it and i know the staff is. I whew, i feel very much like a mother hen of all the students here. For eric, im so proud of him. Hes come so far. But its concerning that hes not going to someplace thats going to be supportive and meet ahead. I feel worried about him. So that makes it harder to see him go. Time to go home. Kids and these adults a chance, because what they bring to the table is really amazing. They have so much to add. Bye. Bye. Goodbye. All right. Bye. Ill see you. You ready . Eric gets on the school bus for the very last time headed towards an uncertain future. While erics transition was deliberately unceremonious, nicks is much more of a celebration. Want a graduation . Reporter although nick hasnt been in a regular classroom for most of his life, he is participating in the School Districts graduation request. His teacher, Holly Stovall and receives his diploma. Just a few years ago, a crowd like this, would have been overwhelming and stressful for Nicholas Joseph kobiskow. [ cheers and applause ] [ applause ] 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 that thought i couldnt. I sat here. And look, 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 futures are chaotic. And threaten to undo a lifetime of learning. He has come so far in the couple of months. And then tomorrow it just ends . Like, thats just mindboggling thats crazy. Starting tomorrow, hes stuck in the house. Its not fair to him. Coming up to raise an autistic child, you cant do it without the help. There . We take our hidden cameras inside a dayham. They are just sitting in a room. Moving a tv is a real pain. Would that be easier if i had prism tv from centurylink . Sure. Ive got centurylinks wireless settop box, which makes it pretty easy. Let me show you. I could move it here. Or here. Even here. Switch to centurylink. Get the prism essential tv package with internet for only 70 a month for one year with autopay enrollment. Didnt even break a sweat. Reporter a month after nicks graduation, his mom lenore is flipping through his appointment calendar where she keeps track of meetings with teachers and other caregivers and its empty. Lenore is on her own. I remember pulling the shade. Turning on the air conditioner. And saying, okay, buddy just me and you. Reporter as the weeks go on, lenore is watching her son regress before her eyes. His personality dimmed. His willingness to interact dimmed. There is less practice. Less to do. Less opportunity. Its like, 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 there is a catch. Even if the funding comes through, the state requires anyone receiving services to have a social worker and lenore cant find one. When you are ready. Reporter lenore has taken nick to interviews for a number of agencies that provides 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 we are going to do it. I dont know what kind of life he is going to have. Because we are looking at a really barren landscape for him. I dont think i have 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 not addressing the needs of adults and the growing population of adulting living with autism. Reporter its not addressing its not. Reporter without jobs or housing, adults with autism. And 80 under age 30, live at home. Which is what eric is doing now that he has turned 21 and aged out of the Rebecca School where he had constant support. For these kids it is terribly arbitrary. I understand 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. It suddenly hit us, we are into the rest of our lives. And and its been, a big change. And a frightening one. Reporter with no more teachers and friends to stimulate his skills, eric is losing some of the speech he gained in school. So he cant sit in the circle. Sofa or circle. Circle. So she cant sit in a circle. He is sleeping 12 to 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. Erics mother explored free day programs offered by the state known as dayhabs. She doesnt like what she has seen. What did you see . With their heads on the tables, wandering around, just just being in storage. They are 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 is 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. They have a break from 10 30 1 00. Reporter and outside the facility, there is barbed wire for safety reasons. State told me not to look at the state programs because they are terrible. Reporter that speaks volumes. Reporter that someone within the state system would say, yeah. Horrible. Reporter new york state says it is helping more and more people lead increasingly independent lives. It says its in the process of shutting down shelter workshops and trying to help people find jobs. I had always thought when he got older, hade this big idea that he would have some kind of a job and it would be over and im only adjusting now over the last two years to this transition period to understand its never going to be over as long as i am 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 incidents of depression among parents and caregivers. Six months after erics graduation, mary is struggling. 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, feeling desperate, starts to think that 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 worried, eric . I look at the future and that feels so hopeless. I mean, mommy. Reporter both families are watching their sons slip away, discovering they have to make compromises but its 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. Coming up hope. A teen that comes to help him you can collect rainwater to shower with, but there are easier ways to go green. Like taking shorter showers, which conserves water and lowers your bill. Youll sing long ballads in the rain and short ditties in the shower. The more you know after watching her son eric sink further into his own world, bored alonely with nothing to i kind of snapped out of my own depression and came to the realization that if i didnt do something, eric was just going to stay the way he was. So mary, who was once a professional artist, becomes her sons teacher. I built a binder for him, i built lessons, put together a daily plan for him. This is how its set up for an adult. You graduate and all the 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 probably our least expensive year has been 40,000. And the higher ones have been around 90,000. Reporter 90,000. For a year . Uhhuh. We havent been able to save any money. But its when people ask me how much does it cost to raise a kid with autism . Everything youve got. For nick there is good news. His mom finds a social worker to take his case. After three months on the wait list, he is approved for the selfdetermination program. Lenore now has state medicaid money to hire a support team for nick including 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 guys, look, you can do it. Reporter here is something that may seem odd that makes nicks mom proud. He is crying. Expressing emotion like this has always been a challenge for him. So when he cries, there is a little happy dance going on from my side. Because he didnt do it before. He does it now. Which means i bet there is a lot more that he didnt do before that is going to happen. And were ready. Reporter lenore cant sit back for long. There is another unexpected change. Reporter your husbands job is shifting to florida. Yeah. Yeah. Reporter why the deep intake of breath . Because 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. Went to providers down there. We asked the questions. Reporter dateline is with lenore on her visit to agencies where employees are incredibly candid about how little they have to offer. They allow their conversations are you going to have those guaranteed services from new york to here . No you are not. No. And i would be lying to you if i told you you would. We always say if there is a way he can remain there, then you are you are 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 of the wait list. Reporter how is it possible that things are so different from one state to another . The Funding Source is medicaid. And medicaid is a state federal partnership. Reporter sharon lewis is a Senior Adviser on a disability policy for the u. S. Government and she said that states decide how to spend federal money for adults with autism. There is no minimum requirement in terms of how many people you are going to search, how much you are going to spend on this. It is a state decision. Reporter so the federal government cant say to florida, you have got to do the same thing . At this point, under the law, no. Reporter whats more, lewis said 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. The programs are overstressed with the numbers. Why we see wait lists. Reporter thats the bottom line . We dont have the budgets. We have not addressed the need for Long Term Services support in this country. Reporter lewis 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 the families have to become super advocates . 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. Reporter 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 . It will be Long Distance and it leaves nick and my daughter and i here to try to figure out how we are going to be as 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. 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. Hes really a gifted artist and i see really good things coming out of this. Its not a done deal. For the last three years, mary and lenore have carried their son through an unstable, scary transition. They fought for every bit of help they could find and theyve 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 statefunded program that sends aides to his home. Then, his family had to break up in order to keep his services. And not long after, another change. He abruptly loses some of his services again. Graduated was falling off a cliff. This is like being pushed off a cliff. Reporter heres why. New york state put new conditions on how government funding can be used to pay for programs like nicks. He uses 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 keep my fingers crossed and work with him minute by minute. Minute by minute. Some days are truly minute by minute. Reporter after months of lobbying state administrators and looking for loopholes, she some of his support team. Lenore brings them back up to speed on nick. We know now, hes just him but he needs support from us to be okay 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. Enjoying nick and their team members as they recycle bottles that he collected. Thats about 3. Reporter nick donates the money he makes to the charity makeawish. He had a makeawish a few years ago and that was lifechanging for him. Ah, thank you so much. Not everybody works a paying job and that doesnt mean that they dont contribute to their community. For all your hard work. And right now, were teaching something as 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. Skill. Hes taking the subway by himself. A big step on the track to becoming more independent. 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. 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 an art program. Its called pure vision art ran by the shield institute, a nonprofit organization. Eric shows us some of his artwork. 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, who is 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. I am really, really proud of you. This is a big show and its very 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 and just think he does have a chance at a life away from me. 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. Reporter what happens when youre not there anymore for him . 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. 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 kids. 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