3 f2 >> podrian ser sus vecinos. neighbors. >> he's a beautiful toddler, running up and down the hall chasing our labrador retriever. >> they live with some of the most vulnerable among us. >> a peanut butter sandwich. >> and they rely on the care and kindness of others to get by. >> you can do it without the help. >> until now. >> we're going to need these people, and i can't have them anymore. >> what are you most afraid of? >> his world is going to collapse. >> tonight an intimate journey where you'll meet eric and nick and their extraordinary mothers. >> moms do what moms got to do. >> trials no family should have

to face. >> i'm 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 can't and he won't, well, he can and he will. >> lives on the brink. good evening and welcome to "dateline." i'm 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: it's 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 well-wishes with friends and teachers. >> see you later man! >> reporter: his mother mary clancy is feeling emotional about her son's 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 you'll 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: that's because when eric and nick leave school, they will lose the specialized help and structure they've had for most of their lives. and there's 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 we've worked for, we are taking away, and you will leap off a cliff into nothingness. right now the picture is nothingness, it's black. absolutely black. >> reporter: for the last three years, "dateline's" cameras have chronicled the lives of these two families as they made this leap. >> i don't think i've ever been more terrified than i am right now. >> reporter: we've watched them struggle to find resources. >> he's falling apart. he's a mess. and i need help, and i need help like two months ago.

>> you don't feel like you can do it this morning? >> reporter: and battle to build a future for their sons. >> feels so good. feel the air. isn't 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. >> you're 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. >> you're a big boy. >> becoming a young man. >> reporter: it wasn't 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 18-month-old, mary noticed eric only had a few words, and he'd become repetitive playing an old cassette tape again and again. >> and so that was the first hint. the pediatrician then said, "it's time to get him looked at." i don't 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, i'm sure you would do absolutely anything for your son.

>> of course. that's 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 york's long island, where he lives with his parents and sister. nick doesn't 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." it's 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. >> he's developed a very, we call it, choreography. it can take him two hours sometimes to cross a room. it's painful to watch. >> reporter: nick needs individual attention that's hard to provide in a classroom. so his local school district sends aides to work with him one-on-one at home. but like eric, nick's 21st birthday is around the corner. they'll 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 it's even crueler not to offer it in the first place. and i don't know what the answer is. and in 40 some odd weeks from now, we're gonna find out. >> reporter: the burden of caring for eric and nick will fall almost entirely on their families, especially on their mothers, and you're 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. >> it's a cause for celebration because he's come such a long way. >> but will nick and eric's progress continue without help? >> without purposeful things to do, he will fall back into the autism world. he's so much happier out of it. i've been drivin' a lincoln since... long before anybody paid me to drive one. i didn't do it to be cool. i didn't 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.

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>> i'm not finding anything appropriate for him yet. >> reporter: eric sadowsky's parents are sitting in an emergency meeting with the principal at his school. >> what are the options for him for next year? >> reporter: eric's 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 eric's 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. it's a private school dedicated to providing specialized support like speech and occupational therapy to children with developmental disabilities. >> it's a place where he's understood and he's cared about. he loves the teachers. he's very, very attached to them. the rebecca school is like a family to him. >> reporter: it's expensive too, $100,000 a year. after some costly legal wrangling, eric's parents got the public school district to pick up the tab. that's 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. he's so much happier out of it. but that's where his brain takes him. it's hard. i really need these people and i can't have them anymore. >> reporter: as an adult, eric will be eligible for social security. and he'll 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 can't 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 think-tank devoted to studying the issues around adults with autism. because autism 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 it's 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 don't outgrow autism? >> you do not outgrow autism. >> look, we're gonna play catch! >> reporter: the clock is ticking on nicholas kubicsko's 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. >> i'll 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 nick's 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 self-destructive, 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. >> it's 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 it, yep. >> 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, nick's aggression has nearly disappeared. he's started venturing out of the house, taking trips to a local bagel shop, even the grocery store. he's made so much progress that his family decides to take their first vacation in seven years. the destination? nick's favorite place on earth. >> nick, we're in disney! >> this is a big deal. it's a big deal for our whole family. we all want to go home and talk about it. >> reporter: nick's older sister tasha says she's proud of her brother. >> it's a cause for celebration because he's come such a long way. and he's as typical as i would love for him to be. >> reporter: even as nick's confidence is growing, he may not know what's about to happen

when he turns 21. his family knows and can't help but worry. >> what are you most afraid of? >> pulling that plug. his world is going to collapse. everything that we've spent -- the hours, the dollars -- is about to go down the drain. >> reporter: in eric's case, he's very aware that change is coming. he even talks about leaving the rebecca school with one of his aides. >> so you don't want to have a graduation party this year? >> not yet. wait until you're 25. >> okay. >> he's really under stress. he has a fantasy about taking all of the girls that he's 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 don't want to have graduation for five more years? >> no, not yet. you have five more years of

school! >> this is him organizing his future. >> you're 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 >> he's pretty upset about leaving rebecca school and leaving his friends. and i don't have anything positive to tell him about what's coming up. >> graduating -- >> nickolas joseph kubicsko. >> to an uncertain future. >> he's come so far. that's crazy. >> when "dateline" continues.

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>> 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. it's supposed to be a set of measurable goals designed to prepare young people for adult life. but nick's mom, lenore, hasn't 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, i'm fearful that we're just delaying and delaying here and nickolas's needs are not being met. >> reporter: "dateline" found

nick's case isn't 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 didn't know how to make it gel. the whole system just didn't make any sense at all. >> and there's 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 i'm

like, my god, it was chaos. >> you're 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 he's 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: eric's mother mary is deeply concerned about her son's transition too. she's been looking for adult programs for him for years. >> my short list of things that i thought probably would come through, i'm working my way through them, and i'm getting a lot of shut doors. >> reporter: mary's 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. you're not done yet! wait until 2016. >> that's so far away! right now we're in 2012. >> it's really tough. i wish we had more of a plan for eric. >> reporter: joshua rich, eric's head teacher, says the day is even more difficult because eric is the first student to age out of the rebecca school. >> we've brought him so far and then we're leaving him in uncertain position, which is really upsetting. here's your artwork. want to put that in your backpack? >> reporter: eric wants a quiet ending. no graduation ceremony, no party, no celebrations. eric's 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, i'm so proud of him. he's come so far. but it's concerning that he's not going to some place that's 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. it's really amazing. they have so much to add. >> bye, tina. >> can i give you a hug? would that be ok? goodbye. >> alright, eric i'll see you, man. >> reporter: eric gets on the

school bus for the very last time, headed toward an uncertain future. while eric's transition was deliberately unceremonious, nick's is much more of a celebration. >> we're going to graduation? although nick hasn't been in a regular classroom for most of his life, he's participating in the school district's 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, let's

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 couldn't? i sat here. and look it -- i walked the stage myself. and i did it." and he did. >> reporter: the celebration will be short-lived. nick and eric are about to find out that their immediate future are chaotic and threaten to undo a lifetime of learning. >> he's come so far in these couple of months. and then tomorrow it just ends? like that just is mind boggling for me. that's crazy. it's a shame for nick. starting tomorrow, he's stuck in the house. and it's not fair to him. >> coming up -- >> raise an autistic child, you can't do it without help.

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>> reporter: a month after nick's graduation, his mom lenore is flipping through his appointment calendar. it's where she keeps track of his meetings with teachers and other caregivers, and it's empty. >> there's nothing to write. there's 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, it's 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 there's less practice. there's less to do. there's less opportunity. it's like -- it's literally dimming the lights. >> reporter: nick has been on a waiting list for government money to pay for the at-home services his mom really wants. but there's a catch, even if the funding comes through, the state requires anyone receiving services to have a social worker, and lenore can't find one. >> ok. when you're 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 can't -- you can't do it without the help. and right now, i don't know how we're going to do it. i don't know what kind of life

he's going to have, because we're looking at a really barren landscape for him. i don't think i've ever been more terrified than i am right now. >> reporter: autism advocate linda walder says government programs aren't designed for adults with autism. >> the system is really broken. it's dated. it's not addressing the needs of adults and the growing population of adults living with autism. >> reporter: it's not addressing the reality we have now. >> it's not addressing today's reality. >> reporter: without appropriate jobs or housing, adults with autism have higher rates of unemployment than individuals with other disabilities. >> you don't 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 he's turned 21 and aged out of the rebecca school where he had constant support. >> reporter: does 21 seem arbitrary to you? >> for these kids, it's terribly arbitrary. i understand that the state has

to have some limits. they can't 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 can't find something productive for him to do now. this is what eric's 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 we're into the rest of our lives. and that's 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 can't sit in a sofa. circle. >> sofa or circle? >> circle. so he -- so she can't sit in a circle. >> he's 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: eric's mother has explored free day programs offered by the state known as "dayhabs." she doesn't 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. they're 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, there's barbed wire. the staff says is there for 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, "don't come here." >> yeah. she said, "honestly they're all horrible." >> reporter: new york state says it's helping more and more people with developmental disabilities lead increasingly independent lives. it says it's 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 it's never going to be

over. as long as i'm 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 eric's graduation, mary is struggling. >> reporter: it must be so hard. >> it is exhausting. the biggest thing that hurts for me is loneliness and isolation. it's 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 i'm 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, "don't 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? >> it'll 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.

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>> 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 didn't do something, eric is just going to stay the way he was. >> reporter: so mary, who was once a professional artist, becomes her son's 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: eric's 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 you've 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 haven't been able to save any money. we don't have any retirement. but it's kind of like when people ask me, "how much does it cost to raise a kid with autism?" everything you've got. >> reporter: for nick, there's some good news. his mom finds a social worker to take his case. after three months on the wait list, he's approved for that self-determination 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 they're 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 don't know what's bothering you today. >> reporter: and here's something that may seem odd that makes nick's mom proud, he's crying. expressing emotion like this has always been a challenge for him. >> so when he cries, there's a little happy dance goin' on from my side, because he didn't do it before. he does it now which means i bet there's a lot more that he didn't do before that's gonna happen. and we're ready. >> reporter: but lenore can't sit back for long, there's another unexpected change. your husband's job is shifting to florida. >> yeah. yeah. >> reporter: why the deep intake of breath? >> cause that's a big scary thing.

that's a big scary thing. >> reporter: with lenore working only part time, the family relies on her husband mike's 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. that's a big reality check. >> are you gonna have those guaranteed services from new york to here? no, you're not. >> no. >> and i would be lying to you if i told you you would. >> we always say, if there's a

way that he can remain there then you are, you know, you're 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, "don't 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. >> there's no minimum requirement in terms of how many people you're gonna serve, how much money you're going to spend on this. it's a state decision. >> reporter: so the federal government can't say to florida, "you've gotta do the same thing." >> at this point under the law, no. >> reporter: what's 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 can't take that much

weight. >> i think that the programs are overstressed with the numbers. i mean it's why we see wait lists. >> reporter: is that the bottom line, we just don't have the budgets? >> we have not addressed the need for long-term 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 five-year plan to better coordinate services for adults with disabilities. doesn't 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, they're coming from families who have high expectations. they're the parents who are sitting on the phone for hours. back in new york, nick's family decides he's 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'll be long distance. and it leaves nick and my daughter and i here to try to figure out how we're going to be three quarters of a family and keep dad connected. >> reporter: and eric's family is also settling for a situation that's 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. >> it's simple things like setting tables, delivering mail. they even have dog walking, delivering meals to the elderly. >> let's get to work everybody. >> eric's doing excellent job working. >> while they don't do that much, it's 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 don't know is that there's 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. >> it's not over. it's not a done deal. see the individual. nestled away in northern california, in the quaint town of petaluma you'll 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 don't 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 ♪

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years, mary and lenore have carried their sons through an unstable, scary transition. they've 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: here's why, new york state agencies put new conditions on how government funding can be used to pay for programs like nick's. he loses valuable members of his

team overnight and quickly spins out of control. >> he's falling apart. he's 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, she's on her own. >> that's 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 minute by minute. >> you're 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 nick's support team. over muffins and coffee one recent weekend, lenore brings them back up to speed on nick. >> we know now he's not wrong, he's 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, i'm not great with math. that's 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 doesn't mean they don't contribute to their community. >> for all your hard work. >> and right now we're 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 i'll be right back. >> reporter: he's recently learned a new skill, he's 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 eric's mom has traded the dayhab for something even better. eric has been chosen for a selective art program for adults with developmental disabilities. it's 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, who's 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'm really really proud of you. this is a big show. it's really special. >> reporter: his art is on the walls, and it's for sale. >> i'm very proud of you. he is really a gifted artist. and i see really good things coming out of this. i'm 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 it's hard to imagine a day when she won't be managing her son's life. and she knows when that day comes, the responsibility will fall to nick's sister. what happens when you're 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. >> it's not going to get any better until parents get together and force change. it's 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 can't and he won't. well, they can and he will and he does and he is. it's not over. it's not a done deal. see the individual. >> that's all for this edition of "dateline."

we'll see you again thursday at 10:00, 9:00 central. i'm 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.