tv Dateline MSNBC February 10, 2018 1:00am-2:00am PST
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>> 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 get to this day 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.
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>> 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. >> reporter: everything that 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. 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
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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. our story starts months before their worlds turn upside down on a warm summer evening in new york city where eric and mary are out on their weekly date. >> eric's in the congo, nothing can go wrong-o.
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>> he's not afraid, not afraid, >> 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're a big boy. >> and really becoming a young man. you'll be a young man. >> yes. >> yeah. >> reporter: it wasn't so long ago that eric was a little boy, running around the apartment 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 attachd to me. >> reporter: but when he was about 18 months 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? >> you want bagel yeah. >> reporter: mary was building a career as a professional artist, but she put those ambitions on hold to care for her son full
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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 couldn't say no to any possiblity 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
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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 could 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
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>> 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. >> reporter: in a sign of just how much progress nick has made his family is able to take him to his favorite place on earth, disneyworld. >> i think it's a cause for celebration, because he's come such a long way. >> reporter: 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. mother nature
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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. the long island teenager has just months left before he turns 21 and loses access to resources his mother says have changed his, and her, life. >> i never gave up on nick. i always knew that there was more to him. i knew that he was in there. i knew he was trying and 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.
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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 >> 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.
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he's made so much progress that his family decides to take their >> 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 she's proud of her brother. >> it is a quest for celebration because he has come such a long way. and he's a typical as i would love for him to be. >> even as nick's confidence is growing, he may not know what is 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.
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everything that we spent. the hours. the dollars is about to go down the drain. >> in eric's case, he is very aware that change is coming. he talks about leaving the rebecca school with one of his aides. >> you don't want to be a graduation party this year? >> not yet. wait until you're 25. >> he's really under stress. he has fantasy of taking all of the girls he loved on a trip where they do go away together. he got so frightened of 21 that he moved it to 25. >> you don't want to have graduation for five more years? >> not yet. you have five more years of school. >> from what you can tell, what does he know? >> he is upset about leaving rebecca school and leaving his friends. i don't have anything positive to tell him about what's coming
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up. coming up, graduating. >> nicholas joseph. >> to an uncertain future sdplchlt he hfuture. >> he comes so far and it just ends. that's crazy. >> when "dateline" continues. liked to sty my dog as a kid... loved motherhood, rain or shine... and were pumped to open my own salon. but i couldn't bear my diabetic nerve pain any longer. so i talked to my doctor and she prescribed lyrica. nerve damage from diabetes causes diabetic nerve pain. lyrica is fda approved to treat this pain from moderate to even severe diabetic nerve pain. lyrica may cause serious allergic reactions, suicidal thoughts or actions. tell your doctor right away if you have these, new or worse depression, unusual changes in mood or behavior, swelling, trouble breathing, rash, hives, blisters, muscle pain with fever, tired feeling or blurry vision. common side effects: dizziness, sleepiness, weight gain, swelling of hands, legs, and feet. don't drink alcohol while taking lyrica.
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with disabilities. before special education students graduate, federal law says they must have a transition plan created by the school district. it is supposed to be a set of measurable goals designed to prepare young people for life. nick's mom hasn't received anything. she and her husband mike called the school superintendent to complain. >> i have no transition plan. the clock ticking which is why i said i'm fearful we are delaying and nicholas' needs are not met. >> excellenexcellent. >> she makes frantic calls trying to get nick hooked up with an agency to provide him with adult services. >> we put it off until monday and that's on the list of what to do. >> the whole system did not make my sense at all. >> there is no instruction manual.
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>> depending on who is on the phone, i have made calls to 30 agencies and taking notes. i look back at the notes. i think, my god, it was chaos. >> there is one particular program lenore has been desperate to get nick enrolled in before he ages out. known as self determination. the government would allocate a certain amount of money for nick and let his family pick and choose on services for him at home. with graduation a few weeks away, lenore finds out he is on the waitlist. >> he has no program to transition to because the funding is not there and he is on the waiting list. >> eric's mother is concerned about his transition. she has been looking for adult programs for years. >> my short list and probably he would come through. >> mary is finding few options
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for adults and fewer options for adults with autism. >> i wanted to put in one of the local ys with a special needs program. they only go to 14. this is the phrase i hear from agency program center all the time. >> on the day after his 21st birthday, eric walks in to school for the last time. >> hi, eric. >> sabrina. not done yet. wait until 2016. >> so far away. right now we're in 2012. >> it's really tough. i wish we had more of a plan for eric. >> joshua, eric's teacher, says the day is more difficult because eric is the first student to age out of the rebecca school. >> we brought him so far. >> here is your art work.
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>> eric wants a quiet ending. no ceremony. no party. no celebrations. eric's principal says his departure is tough on everyone. >> i feel like a mother hen here for eric and all the students. eric has come so far, but it is concerning he will not go some place that is supportive and meet his needs and move ahead. i am worried about him. that makes it harder to see him go. >> time to go home. >> everybody should give these kids and adults a chance because what they bring to the tablemaa.
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they have so much to add. >> can i give you a hug? good-bye. >> eric, see you, man. you ready? >> 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 more of a celebration. >> going to graduation. >> although nick hasn't been in a regular classroom for most of his life, he is participating in the school graduation ceremony at his parents request. his sister supports him as he receives his diploma. a few years ago, a crowd like this would have been overwhelming and stressful for nick. >> nicholas joseph.
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>> class of 2013. >> 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 who thought he couldn't. i sat here and thought i walked the stage and i did it. he did. >> the celebration would be short lived. nick and eric are about to find and threaten to undo a ures are lifetime of learning. >> he's come so far in these couple of months. tomorrow just ends? that just is mind boggling for me. that's crazy. coming up. >> to raise an autistic child.
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>> we take our hidden cameras in the day care for adults like eric. >> just sitting in a room. >> when "dateline" continues. copd makes it hard to breathe. so to breathe better, i go with anoro. ♪go your own way copd tries to say, "go this way." i say, "i'll go my own way" with anoro. ♪go your own way once-daily anoro contains two medicines called bronchodilators, that work together to significantly improve
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i'm dara brown. here's what's happening. kim jong-un reportedly invited the south korean president to the north for a summit. it came from kim's sister during lunch with the leader. president trump is denying the release of the democratic memo which alleges government accuse of surveillance. the democratic memo has classified material that needs to be reviewed before released. now back to "dateline." welcome back to "dateline." i'm natalie morales. our cameras followed two families over a three year period documents their lives as
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their special needs sons reached 21 and the school programs abruptly ended. what would the future hold for the young men? here's kate snow. >> a month after nick's graduation, his mom is flipping through his appointment calendar. where she keeps track of meetings and care givers. it's empty. lenore is on her own. >> what were the first weeks like? >> i remember pulling the shades and turning on the air conditioner and saying it's just me and you. >> as the weeks go on, lenore is watching her son regress. >> his personality dimmed. his willingness to interact dimmed. there is less to do. there is less opportunity. it is dimming lights. >> nick has been on the waiting list for government money to pay for at-home services his mom wants, but there is a catch. if the funding comes through,
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the state requires anyone receiving services to have a social worker and lenore can't find one. lenore has taken nick for interviews at agencies to provide social workers, but none have agreed tgreed to take his >> to raise an autistic child. you can't do without the help. 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 barren landscape for him. i don't think i have ever been more terrified than i am right now. >> autism advocate says government programs are not designed for adults with autism. >> the system is really broken. it's dated. it's not addressing the needs of adults and growing population of
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adults living with autism. >> without appropriate jobs or housing, adults with autism has higher rates of unemployment than individuals with other disabilities. and 80% underage 30 live at home. which is what eric is doing now he has turned 21 and aged out of the rebecca school where he had constant support. >> does 21 seem arbitrary to you? >> it is for these kids. i understand that the state has to have some limits. they can't support people forever, but this is no solution. >> mary wonders if all of the money spent educating eric would have been a waste if she cannot 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. >> it suddenly hit us we're into the rest of our lives and that's
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been a big change and frightening one. >> with no more teachers and friends to stimulate language skills, eric is losing the speech he gained in school. >> he cannot sit in the -- so he can't sit in the circle. >> he is sleeping 12 or 13 hours. drifting in and out of his room. singing to himself a lot. talking to himself a lot. really regressing into his own world. withdraw. >> eric's mother has explored free day programs offered by the state known as day habs. she doesn't like what she has seen. >> what did you see? >> i saw rooms full of people with heads on their tables and wandering around. just being in storage. sitting in a room.
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>> "dateline" took hidden cam a cameras in 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. >> 8:30 to 3:00. they have a break from 8:30. >> and outside the facility, there is barbed wire. the staff says it is for safety reasons. there are often huge wait lists to get into day habs. >> somebody told me not to look at the state programs. >> someone in the state system
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says don't come here. >> yeah. she said honestly, they are all horrible. >> new york state says it is helping more and more people with developmental disabilities lead increasingly independent lives. it is in the process of shutting down sheltered workshops and trying to help people find jobs. >> brooke can make a peanut butter. >> i always had an idea he would have a job and it would be over. i'm only adjusting over the last two years to understand it is never going to be over. as long as i'm alive, i will be caring for eric. >> being a champion for someone who has a developmental disability can be draining. studies show a higher incidence of depression among parents and care givers and six months after eric's graduation, mary is struggling. >> the biggest thing that hurts is loneliness and isolation.
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it is very, very hard. i absolutely love this boy. >> mary's feeling desperate and starts to think that one of those day habs may be better than nothing. she sends in an application. >> i still wake up every single morning in a panic and worried about what will i do about eric. >> eric needs to get outside. >> i look at the future and that feels so hopeless. >> mommy -- >> both families are watching their sons slip away discovering they have to make compromises. as difficult as things seem, one family is about to discover things could be even worse. coming up. >> we have nice weather. that is about the letting vel o sericertifservice we have here. >> the team that comes to help him helps me do better for him. >> and heartbreak. >> what does it mean?
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>> it will be long distance. >> when "dateline" continues. ans plus more vitamin c than 10 oranges. why not feel this good everyday? emerge and see. my healthy routine helps me feel my best. so i add activia yogurt to my day. with its billions of live and active probiotics, activia may help support my digestive health, so i can take on my day. activia. now in probiotic dailies.
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teacher. sd >> i built a binder for him and put together a daily plan for him. this is how it is set up for adults. you graduate and all education stops. eric is nowhere near finished with his education. >> eric's parents are paying out of pocket for activities to get him out of the house. he has a gym membership and music therapy class and companion to take him places. it comes at a staggering cost. >> do you have idea of how much you spent? >> probably $40,000 or others around $90,000. >> for a year? >> yes. we have not been able to save money. we don't have retirement. it's like when people ask me how much does it cost to raise a kid with autism. everything you got. >> for nick, his mom finds a social worker to take his case and after three months on the
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wait list, he is approved for the self determination program. l earthqua lenore has state money to hire support team for nick. including familiar faces. like holly, his former teacher. >> the team that comes here for him helps me do better for him. when they're here, they he meet his needs. they carry him. i get to sit back and mom and say you go, guy. you can do it. >> i don't know what's bothering you today. >> here is 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. >> when wihe cries, there is a happy dance for me. he didn't do it before. he does it now. which means i bet there is more he didn't do before that's going to happen. we're ready. >> but lenore can't sit back for long.
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there's another unexpected change. >> your husband's job is shifting to florida. >> yeah. yeah. >> why the deep intake of breath? >> because that's a big scary thing. that's a big scary thing. >> with lenore working part-time, the family relies on mike's income. they decide to take a scouting trip to florida to find out if nick can get the same support there. >> we went to medicaid. we went to providers and asked questions. >> "dateline" is with lenore on her florida visit where agencies are candid about how little they have to offer. they allow her conversations to be recorded. >> we have a long waiting list. >> can you give me an idea. >> 22,000 people on the waiting list. >> that's a reality check.
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>> will you have the guaranteed services? >> we always say if there is a way that he can remain there, then you are -- you are really trading in a lot for nothing. we have nice weather. that's about the level of service that we have here. i tell people don't move here sdplchhere. >> we asked the state of florida and they have approved more funding to get people off the wait list. >> how is it so different from one state to another? >> the funding source is medica medicaid. >> sharon is the senior adviser on disability 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 will serve and how much money you spend. it's a state decision. >> the federal government can't
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say to florida you have to do the same thing. >> at this point under the law, no. >> what's more, states split the 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. back in new york, nick's family decides he is better off staying put. they make a difficult decision. they're breaking up the family. mike will move to florida for his job alone. >> what does it mean for the family? >> it will be long distance. 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. >> 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 day hab in
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manhattan where he does volunteer work. >> it is simple things like setting tables and delivering a meal. they have dog walking. delivering meals to the elderly. >> eric's doing an excellent job working. >> they don't do that much, but it is better than most and he has a mix of young people to be with. he has friends. >> what eric and his mom don't know is that there is something better right around the corner. coming up, a little light at the end of the long tunnel. >> he is a gifted artist. i see really good things coming on out of this. >> it's not over. >> it's not a done deal. see the individual. >> when "dateline" continues.
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welcome back. for three years, our cameras captured the trials and tribulations of two families fighting to get their autistic young adult sons to any programs they could find. the mothers knew the battle for the kids' future is far from over. here with the conclusion of "on the brink" is kate snow. >> mary and lenore have carried their sons through the
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transition. they tried their best to give their sons the support they lost when they turned 21. nick has had a bumpy road after depending on his mom, he finally get help in the form of a state-funded program to send aitds aid aides to the home. then the family had to break up to keep the services. then another change. he abruptly loses the services again. >> our experience when he graduated was falling off a cliff. i said to my husband, this is equal to getting pushed off a cliff. >> here is why. new york state agency has new issues nick's members of the team which he lost overnight.
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>> he's a mess. >> after an episode of anxiety leaves nick hospitalized, lenore calls a program begging for help. lenore feels le she is on her other th own. >> all i can do is work with him minute by minute. some days are truly minute by minute. >> you are thinking about the hotel. >> after months of lobbying state administrators and looking for loopholes. she pieces back together his support team. over coffee one morning, lenore brings them up to speed on nick. >> we know he needs support from us. >> lenore knows nick will always need a lot of help. she knows he can participate in his community. we join nick and his team members as they recycle bottles and cans that nick collects.
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>> $1.25. that's about $3, right? >> nick donates the money he makes to the charity make a wish. s>> that was life changing for him. >> there you go. >> thank you so much. >> not everybody works a paying job. it 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 as simple as collecting bottles and passing the money on to charity. >> for eric, the period of isolation and stagnation he went through after leaving the rebecca school is coming to an end. 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? >> and instead of weekly dinner
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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. >> the best news is eric's mom has traded the dayhab for something better. eric's chosen for a selective art program for adults with developmental disabilities. pure vision arts run by a non-profit. eric shows us some of his art work. >> is that milk or juice? >> milk. >> breakfast. >> eric has also displayed his work in several art exhibits in new york city. at his first show, old friends come to celebrate with him. his mother are who is finally finding time to get back to her own art work is thrilled. one snowy morning, mary and eric
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go to thbiggest publicrt fairs in new york city. >> i am really proud of you. this is a big show and it's really special. >> his art is on the walls and it's for sale. >> 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 he does have a chance at a life away from me. this is a new beginning for him. >> for lenore, she says it is hard to imagine a day when she won't be managing her son's life. she knows when that day comes, the responsibility will fall to nick's sister. >> what happens when are you yot there for him anymore? >> i'm 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 it
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easy as we can for both of them. >> since the report first aired in 2015, both new york and florida have added millions of dollars in additional state aid to serve people with developmental disabilities and provide more services. the families of eric and nick gave us an update. they are facing challenges and financial struggles in caring for their sons. they say one more thing remains constant. they are determined to raise awareness of what parents of children with autism deal within the hope it helps others. >> it will not get 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 of the things they said he can't and he won't -- well, he
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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." i'm natalie morales. thanks for watching. i'm craig melvin. >> i'm i'm natalie morales. >> and this is "dateline." a 12-year-old girl home alone. a man she barely knows at the door. >> i have one quick measurement to do. >> will she let him in. >> i would really be surprised if she does. >> see if your kid would never do that? you talk to your kids about strangers, but what about someone they've met once or twice before, like a contractor? >> what's up, man, john, remember me.
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