WGBH Radio; The Callie Crossley Show

I'm taling Crossley This is the Cali Crossley Show. Today we're talking about aging with autism in the next 10 years we'll see roughly 800000 kids with autism age out of the school system once they're on their own. Many of them will continue to rely on an already beleaguered system of state and federal support services. It's a situation that autism experts describe as an inevitable tsunami in Massachusetts these services may not even be an option. Here we have a system where an IQ score can be the difference between getting state support or not. Well meet parents who are affected by this legislation and a lawyer who's fighting to change it. From there we look at a new program that's training emergency workers like firefighters and police officers to recognize the signs of autism so they can do a better job of helping people with autism. Up next the New Age of Autism. First the news. From NPR News in Washington I'm Lakshmi saying Wall Street seeing a

rebound from weeks of big losses at last glance the Dow was up two hundred twenty two points one point eighty three percent to twelve thousand three hundred fifty. Nasdaq up now more than 2 percent at twenty thirty nine and we see the S&P 500 up 24 points or nearly 2 percent now at 13 10. The Associated Press reports a White House is denying Republican Senator John McCain's claims that senior officials might have leaked national security information to the New York Times. NPR's David Welna says that yesterday McCain who lost to President Obama back in 2008 demanded the appointment of a special prosecutor and a congressional hearing on the matter. McCain took to the Senate floor to accuse high ranking White House officials of being sources for a recent New York Times articles about President Obama approving cyber attacks on Iran and drone strikes against al Qaeda targets in Yemen one could draw the conclusion from reading these articles. It is an attempt to further the president's political ambitions

for the sake of vision reelection at the expense of our national security. McCain said a failure by the Obama White House to appoint a special prosecutor in the case would confirm that classified information was leaked for political purposes. David Welna NPR News the Capitol. The European Central Bank is leaving its benchmark interest rate unchanged and sinking to its outlook of gradual recovery this year. The ECB has been under pressure to cut its record low 1 percent refinancing rate to help stimulate growth in the 17 countries that use the euro. The White House says it wants to see the Europeans pick up the pace of trying to rein in their debt crisis in the coming weeks ahead of the G20 summit. All eyes are on Spain these days there were failing banks threatened to drag down the whole country's economy. Lauren Frayer reports from Madrid Spanish officials have offered differing signals about the likelihood of a bailout their economy minister Luis diggin dough says Spain has no immediate plans to seek a bailout.

He wants to wait for results of an audit of Spanish banks due later this month. But the budget minister yesterday said Spain needs European aid. The difference may be in the word bailout. Spain is hoping for a relatively small infusion of cash into its banks rather than a full fledged rescue with Troika oversight like in Greece Ireland and Portugal even talk of any such relief for Spain's troubled banks is pushing the country's borrowing costs lower ahead of a key test tomorrow a bond auction in Madrid. For NPR News I'm Lauren Frayer in Madrid. Key is recalling more than 20000 Britons SUV because of possibly defective brake pedal mounts it can break during collisions. The vehicles affected are from the 2009 model year. Q says the recall will begin later this month. You're listening to NPR News. Good afternoon from the WGBH radio newsroom in Boston I'm Christina Quinn with the local stories we're following. A real teenager has been found guilty of motor vehicle homicide and negligent operation for causing a fatal car crash last year while texting on his cell phone. Aaron

Deveau was sentenced this morning to two and a half years with one year behind bars and the rest of his term serving community service. His license has also been suspended for 15 years. This is the first conviction of its kind in Massachusetts since the state implemented a ban on texting while driving. In 2010 the Mashpee Wampanoag tribe has received approval of its gaming ordinance by the National Indian Gaming Commission making them one step closer toward meeting all requirements to conduct gaming in Massachusetts. In a letter yesterday and IGC chairwoman Tracey Stevens indicates that the tribe's gaming ordinance meets the requirements of the Indian Gaming Regulatory Act as well as the implementing regulations the Regulatory Act requires that each tribe enact a tribal gaming ordinance that is approved by the end IGC chairman before opening a gaming operation on what is referred to in the IDR a as Indian land. Meanwhile a group of Taunton residents is considering filing a legal challenge to prevent a casino from being built in the city. According to the Taunton Daily Gazette their attorney contends selling land in an industrial park to the Mashpee Wampanoag tribe for

resort casino would violate established land use restrictions. Taunton voters head to the polls on Saturday to weigh in on the casino proposal. In sports the Red Sox take on the Orioles again tonight hoping to make up for last night's loss. Josh Beckett will be on the mound. It's 60 degrees in Boston under scattered clouds and we can expect partly sunny skies throughout the rest of the afternoon with a chance of showers highs in the lower 60s. Tonight will be mostly cloudy with a chance of showers overnight lows in the lower 50s 60 in Boston 67 in Wester under overcast skies and 65 in Providence under mostly cloudy skies. Support for NPR comes from the William and Flora foundation making grants to solve social and environmental problems at home and around the world on the web at Hewlett dot org. The time is 1 0 6. Good afternoon I'm Kalee Crossley. We're talking about what happens when children with autism become adults. And what that means for their parents. What are your plans.

Hopefully get a house get a nice brain a home with central air central back if it works out and I can get a Coca-Cola vending machine to me and I'll make put with it put money I make very cheap not expensive Not me like. Maybe like 45 cents each I'll just make it like. 45 cents. That's Doug from the documentary film autism coming of age. The film looks at how parents particularly and how we as a are are prepared as a society to support adults like Doug with autism. My guest is Fred missile a lawyer who is working to make sure there are enough government resources for people who have autism in their adulthood. Fred missal thank you for joining us. Thank you for having me appreciate being here. Now we've heard this described as a tsunami a wave of people kids who are now have autism who are aging into adulthood. Talk about that if you will. Well there clearly there are indeed a large number of people who have been identified as needing long term services and supports as a result of having being on the autism

spectrum. And there's no question that parents are really being challenge by the current state's regulation which limits access to adult services to individuals who have to score an IQ of below 70 and that excludes a number of people who are not only on the autism spectrum but who have significant learning disorders with learning disabilities who may not test as well or but have splinter skills that exclude them so they clearly are more people who we recognize need services and supports and current practice within the Department of Developmental Services excludes a large number of those. OK. So Laura you know this is you both personally and professionally you have an adult son with autism and you're the director of the Autism Research Center and Central Mass. I didn't know until I saw this film. I didn't think about

kids becoming adults and what happens. What do parents think is going to happen when they age. Well I think that initially parents when they're given a diagnosis of on autism spectrum disorder put their all their eggs in the basket of hope that we're going to get them everything they need we're going to get them the services they need we're going to beat this thing. And it's a gradual process for some people that does happen I have a niece who was diagnosed on the autism spectrum and three who graduated top of her class in Salem State College is married and expecting her first child my son was diagnosed around the age of four. And he got everything we could get in place for him. But as an adult he is still limited Li variable. He is not capable of being alone he has poor safety skills. So you put all your eggs in that basket I hope and it when it doesn't work out. Then you begin to step in looking at what's out there what's going to happen to my child what can I do to position him to it so that the day that we got his IQ when it was below

70. Contrary to what I had been for 18 years fighting and trying to maximize and put him in the best light I danced a jig. Yes good it's below 70 and we're not in trouble. He'll have some services but it's a long and bumpy road and it's difficult for families to actually conceptualize when the children are young that this is not going to magically go away and that you know there is going to be planning that needs to be done. CAROLYN RYAN Do you know what it means not to have state services of the kind that Sue Loring was happy to dance a jig about your adult son does not qualify for them. And I wonder first emotionally when you heard that. And came to the realization that I assume you assume there would be some services available for him and then now you're faced with. No there aren't. Well emotionally we had been fortunate to be in all kinds of areas. My husband was active duty military women. From state to state but we retired up in this

area because this is where I'm originally from and we were settled in the area would have an excellent school system so we were very well supported through our public school system. When the discussion started happening you know 17 is when we were looking at future potential for work and future potential. It was a school system that said well you know you should be applying for this this and that services. So we in fact followed their guidance and did so when we my son we filled out all the paperwork for Department of Developmental disability and he got denied. We were kind of flabbergasted and then we went on for an appeal of which Mr. Miss Lois are representing attorney. And we went through the appeal process and I think the most frustrating thing for us was during that process. Even the state psychologist and the attorney that was representing the state identified the fact that our son needs services will need support for its whole life his IQ can range from

seventy one to 74. But he is functionally limited or disabled and he can be. He can work but he can't hold a job. I mean he can't I can't manage his money. He has difficulty imagining making change. He couldn't negotiate a contract. All of those. Thing and I think what happened to my husband and I was like getting punched in the stomach. And here we had been so hard working parents diligently doing our parental duty working very hard to make him the most productive citizen we could for the state and for the country. And a little bit we asked for in return was being basically denied. Carolyn I want to give people a chance to hear from your son actually from the film. In this clip we hear Dan Ryan getting skills training at his school. You want to run the register today. Me Yeah. Wow I'd love

to. OK. What items are non-taxed Do you remember. I don't know Mr. Kirby. OK. All the clothes the clothes are nontaxable and everything else is taxable. That's right. You ready. To put this in the register and turn the RTG hiring process like you on. So let's start walking. 799 is nontaxable. You're right. That's $9000 and it is six cents. Thank you. You go. $44 that. Have been. 24 cents back. So that was Dan Ryan. CAROLYN RYAN son from the documentary film autism coming of age I think what we learn in there is we hear Dan what's a little bit of support he can function. I mean he's a healthy kid young man. And so we're talking about the loss of the work of

these people who could function but they need this support that we're talking about that's the real tragedy here is that people are do not need extensive or expensive services that the degree of services and supports really are is is is very modest. And with that level of services and support they can become productive citizens paying taxes and being productive members of their community and taking the burden off families is so very important. So Fred you know because everybody wants to know they're saying she would I could loose you some support myself sure. What's the bottom line is it less expensive is it cost effective is it. Advantageously for the state to give the support services in order to get the return of functioning adults who could work and pay taxes. There's no question that services and supports for folks in the community living productive lives over time is an investment in human resources

and as people develop their skills and abilities and contribute over time that's certainly a nurse to the benefit of the of the Commonwealth that over time there will be less or less less costly. The question also comes down to what's going to happen to people who like DN who are 70 want to 74 with their IQ in the state says. Not my responsibility when their parents are gone and there's no family members. Where are they going to. Are they going to show up in our emergency rooms are they going to show up in our homeless shelters. We're going to show up in our jails. No that's the real question we have to take a long view of the lifespan of our clients and say in our citizens and provide a safety net for our But most vulnerable citizens. And what what the current policy of the apartment of Developmental Services is that went into effect in 2000 and six is to shut the door

on people like the Enron. There are many people like Dan Ryan leaving his parents. Adrift right you know that's my guess Fred missile Oh he's a lawyer who's working to make sure there are enough government resources for people who have autism in their adulthood. Parents if you have a kid with autism join us at 8 7 7 3 0 1 8 8 9 7 8 7 7 3 0 1 89 70. And those of you are listening who are like me who had not thought about what happens to the kids who become adults. We in the campaign for autism and to be aware of autism I think are only shown small children and this is a whole other issue have you are you surprised by this is I was where at 8 7 7 3 0 1 8 8 9 7 8 7 7 3 0 1 89 70 you can rise to our Facebook page or send us a tweet at. Kelly Crossley so. So Laurie you're heading up a center you're immersed in the kind of awareness and care and

working with both parents and children so you know what these numbers are I just want to repeat them for people who may not know or say them for people who don't. One in ten of every American child is autistic or on the spectrum one and a half million Americans are living with autism these are one in 88 one in 88. OK. So there we have I don't we're get one into one and a half million Americans are living with autism which has an allocation. But but here's my point. This is a story as as Fred has said that's been repeated often. And I want to know from hear from both of you and from Carolyn Ryan who didn't have the option that you have. What are the options then if a dan ryan Carolynn son cannot get services and they pass away she passes away her husband passes away what happens what are the options. Some of the families that are looking at the increasing number of kids are becoming more proactive in terms of looking at what are going to be the options for my child. And looking

at buying homes with other families securing funding for STD through Section 8 housing to make it affordable and setting up their own future for their child to have a home where they can oversee it till they breathe their last and then perhaps have siblings if you're lucky enough to have siblings take it on. The other piece is that people look at is as some families says Sorry I'm doing the acronym thing Social Security income. Which isn't enough really to live on but it can augment what somebody has. The other piece is that people can look at is adult foster care if their child is living at home with them. But oftentimes what happens with adult foster care. One parent is the guardian. The other parent is the provider and you get funding to be able to bring in some staff to help to give you that break in the time that you need to keep your child in your home but as you get older that's less and

less easy to do. So that's of limited time if you're you know facing health issues yourself my husband is currently disabled. And probably will be for the rest of his life and for me adult foster care simply wouldn't be an option because I'm busy caring for my husband having a child with autism in the House also or a young man with autism would be I wouldn't be able to work and I have to work to keep the roof over our heads so some of those options you know work for families if you are single parent adult foster kids simply isn't an option. So people need to sort of look ahead and it's it's difficult because there is that assumption as you go along that the state's going to take care of your child. And then if you push the notion is to make sure you show exactly you maximize everything you can for them and you get them past that magical number of 7 day you're left holding the bag and scrambling thinking now what do I do now. How do I keep him. Occupied How do I keep him how do I get him a job and obscene families who have kids with their

IQ higher who go off and attempt college and they do fairly well in some subjects but not in others. So there's no real college degree at the end that makes them employ able. It's sort of a way to keep them occupied with the appears. It's a catch as catch em situation we're going to pause there and I want to hear from Carolyn on the other side of when we come back and just to talk about what she did because she's without that option the government support and also to hear from our callers who have some comment about this at 8 7 7 3 1 8 9 7 8. We're talking about aging with autism with a focus on the services and support systems that are available to parents and their adult children who have autism. If your son or daughter has autism join the conversation of 8 7 7 3 0 1 8 8 9 7 8 7 7 3 0 1 89 70. How are you preparing to see your child into adulthood. Have you begun to think about it. This is WGBH Boston Public Radio.

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WGBH. Welcome back to the Calla Crossley Show if you're just tuning in we're talking about what it means to age with autism and whether or not society is prepared to support a population of adults who have it. Fred mistletoe is a special needs attorney Carolyn Ryan has an adult son with autism who does not qualify for services. And Sue Loring is the director of the autism resource center of central mass. Her 27 year old son has autism. If you're a parent with a who's son or daughter has autism join the conversation at 8 7 7 3 0 1 8 9 seventy 8 7 7 3 0 1 89 70. You can write to our Facebook page or send me a tweet at Kelly Crossley. CAROLYN RYAN We promised to hear from you since you did not have the support service from the government. Which Sue was able to get for her child. What did you do. What options have you taken.

Well our son graduated aged out at age 22 out of the school system. I mean he too like Doug in the film the clip that you used at the beginning has a dream and has a goal for himself. He'd like to move out west and live in the Reno Tahoe area and hike and be a forest ranger because he loves to do outdoor activities. He's consequently been home with us and Western has to choose it for the last two years been a little down in the mouth because this isn't quite but he thought life would be like. We are fortunate that Dan's IQ is high enough and he has had a lot of vocational training but he's actually able to maintain jobs but he can't get there without our assistance in scheduling transportation. The only thing he does get is through Americans with this. Will it effect he's able to access it a little more convenient time for him. We live in Western Mass. Bus service is very sparse where we are but we are able to access. That's the one service he does get. So we've just been trying to cobble together what we can to keep him functional he is a taxpaying citizen of this state. But he's living with us. We thought like

you mentioned about the other families. We can't afford to to buy a home at this point for him but we've thought of perhaps moving to a home with a mother in law apartment to give him some sense of independence where we could still oversee him going and check on the mixture is eating properly all those types of things. Dan functions as long as somebody is able to support him and give him like you showed in the clip but guidance and give them a schedule. But you can't initiate and do all those things on his own. So at this point we're doing what we've been doing for a long time putting one foot in front of the other and just kind of blindly feeling our way. And we really don't have an answer. Our temporary answer is he's at home with us long term. We'd like to have a play. For him you know he is what I would consider functionally disabled and that's what the people need to look at how can these people function in society the way society is so technologically advanced and moves at such a fan speed we can function and be a good participating citizen but he can't function without help.

Right now we can't but we need you know with one foot in front of the other day by day isn't a good answer. Well Thanks Carolyn. Let's hear from Kathy from Concord Massachusetts. Cathy you're on the callee Crossley Show WGBH. Eighty nine point seven OK. Hi I can tell you this but I wanted to save and even speak to you I've been a fan for so long about so many contacts just want to say that. Well thank you so much. You all go in and and just OK I brought up my brother my brother home from home when he was 24 and he had unspecified developmental disability and it took the longest time. In those days I didn't have the diagnosis and everything. By the time I finally got him diagnosed he had a brain injury and pervasive PDB an OS which is the autism. But that wasn't until I just kept fighting and helping him myself too. I saw that he would get mono for his explosiveness and I spent time listening to him afterwards having him write down three things he did right. Three things he did wrong and it's going to

kind of you know ages and finally learning that is a big thing for him to sort of transitions when that changed. He would throw out expectations so fast thinking he understood and he'd smile and nod and he didn't even hear any of it. Anyway it was quite a big deal to keep him from being thrown in jail for something being thrown in the mental hospital I'd put him in Maine because even in the country and really worked with him over the years and gradually the explosiveness lessened as he learned and I found different people to help him but by gosh it was just good that the department said no his IQ is tested for but the function was 64 and he just could not manage without the help. Yes you know they get help but will be temporary and then drop to be left. Again and nobody paid attention to the transition how much it would lose in between time. Yes and you know what I want to pick up on both your points. Kathy thanks so much for the call. The first thing Fred missal Oh you're an attorney that deals with

these cases all the time. I think it should be clear that there are states. There are some states that still have this I.Q. requirement Massachusetts is one given Massachusetts General profiles is odd but there are other states that do not write so. So what we're talking about is who cut who gets in who gets who who gets services in Massachusetts those people who are served by the Department of Developmental Services must prove three things that they have an IQ of below 70 deficit's and adaptive behavior and that all of this happened during the developmental period. Those rules went into effect in 2000 and six prior to that time Massachusetts had the American Association on intellectual developmental disability when the Department of Developmental disability the Developmental Services was created in 1996. They were charged by the legislature to create services to individuals with intellectual disabilities as defined within their regulations by clinical

authority. So at that time the department took the position that the clinical authority was the American Association on intellectual developmental disability a professional organization that's been in existence since 1876. They're the foremost leaders thought leaders if you will with regard to individuals with intellectual developmental disabilities. For whatever reason the Commonwealth changed that definition in 2006 to this fixed IQ score that puts us only 13 states are like Massachusetts which restrictive 30 36 37 states or much more broadly defined. Those people who need services some states use the DD definition of the American Association of intellectual about mental disabilities others use approximately 70 others use over 70 with the standard error of measurement. Others go to the developmental disabilities which is the most expensive situation which

has in many people's minds a lot of merit. There is a bill in the state house now that is House Bill. Thirty five twenty seven this past a number of committees is currently in the Rules Committee that if allowed to get a vote up and down vote in the legislature it would require the Commonwealth to use the old definition which is intellectual disability as defined by the American Association on intellectual developmental disabilities. This would bring us into the 21st century. The vast majority have say yes. You know in the Commonwealth it's cost neutral. Just because you get in total just eligible for services does not mean you are entitled to those services after age 22. It's simply allowing people who everybody agrees in these hearings need services and supports everyone in these hearings know that bad things are going to happen if they don't get services and their families go away. It allows them at least some refuge at some point in time to be able to go to the state. So it's cost neutral.

There's no entitlement to adult services everybody gets prioritized so that I think is a solution at least to a number of individuals like the in Ryan and like the like the caller from Concord. Here is a question that came in from one of the listeners and that is and Stu I'll have you weigh in on it first. What happens when a caregiver. Does very often what happens is the individual depending on where they're living and what other supports are in place. The kid gets transferred sometimes to siblings the old but sometimes siblings have had enough in their life and they have to accept it that role right. They do not have to. OK OK I'll thank you. OK very good you know so that you know sometimes siblings will step up to the plate more often than not but sometimes siblings they have moved on with their lives they're living you know in another state they don't have that capacity to help just like the caller who you know took in her

brother. She put herself in you know a lot of work to put him into a good place. And siblings know growing up with the sibling that is a lot of work they're not walking into. Right. With just altruistic ideas. For some people they just fall through the cracks they end up in prior to having my son with autism I ran a substance abuse unit and I got to tell you there was a certain segment of people that we treated that we realized had you know significant impairments and hindsight being 20 20 some of them were on the autism spectrum. So that they fall into other systems because of their inability to make good judgments. Having outbursts in all some of them will end up in the penal system where they you know you got our penal system are ending up in you know earlier in the show. Fred just you know emergency rooms or homeless or whatever it was. So in essence they really become wards of the state. Indirectly indirectly indirectly.

And it's not optimum. Carolyn Ryan go ahead you had this on your. Yes my son Daniel. We were in in that show autism coming of age and I was walking through town one day and I just want to comment. I had a social worker stop me I did not know this woman from from Adam and she said to me I saw you in the show and I just want to tell you I think it is you know reprehensible but she said I work for the Department of Developmental Disabilities and someday we'll get him. When you're gone and he's homeless. And that their reality. Well this makes the next comment from Ryan who wrote in on Facebook one that all of you can take up again you've addressed it somewhat. Through this conversation Ryan writes I certainly sympathize with your guest but where is the funding for this support supposed to come from the current system is in place because of the dire situation we face regarding all mental health funding. To use your

guest's terminology opening the door to these services for people with higher IQ this will mean closing the door on people who already rely on them. Fred Midsomer. First we all recognize that a line has to be drawn between those individuals who receive services and those services people who don't. The line has to be rational. It should be humane. It should recognize that those individuals who are categorically denied as a result of a meaningless number on an IQ is is not the best social policy is the worst type of social policy. The best social policy is to look at needs services and supports and tune in to ration out those services to those who need them most. Based on a rational clinical authority that is respectful. The other part of this is families that I work with and I work with hundreds of families who plan for the future of their son and daughter and their lives literally revolve around their son or daughter or a family member with special needs and intellectual developmental

disability what other disability that requires long term services and supports families don't go away. They simply need a little bit of help. They simply are not looking for the state to take over and to not provide support. They just want some sense that their government works for them that their government recognizes that there are limits to what a family can do and it is simply inequitable and unfair for the Ryans of other people similarly situated like the Ryans to basically be told by the Commonwealth you're on your own or. And we recognize that hearing you need services and supports everyone recognizes we need services and supports but because of the way the system is rigged you're on your own. That seems to me to be unfair and not the kind of Commonwealth that we all want to be proud of. And so lowering as head of the autism resource center of Massachusetts you hear these stories and see it all and of course you do you live it too because you you have a child with

an adult child with autism. But here's the thing that I don't know that a lot of people understand about you know the political thing. Now that ought to ism has become more in our minds. I mean I think five years ago 10 years ago maybe people sort of knew about it but there's been a lot of awareness worked around certainly young kids but now it's a player if you will in the in the mental health seemed as we sort of lobby for whatever limited funds there are views of what what Ryan has said. So will there be more attention paid now to this. The simple requests of support that Fred is talking about that Carol is talking about that you know how much is is needed. So well will there will will autism get a bigger space now in the in the mental health. I don't know group I guess. Well I would think so about 10 years ago. Various autism organizations came together and formed an organization called FEMA advocates for

autism up in Massachusetts. And we've been somewhat successful a family as a player in getting the RICO laws passed prior to the RICO a raker is an act relative to insurance coverage for autism. OK. And the law mandates that insurances must pay for medically necessary treatments for autism prior to that in this state. You had a child with autism you didn't get services for your child if you went for speech therapy and your insurance policy they would say he has autism we don't cover that. And so you didn't have access to health care for your child with autism for that specific condition. So we've been able to get that passed and a good portion of the state's residents now have that opportunity. If you have a self funded plan or if you're on mass health you don't have that yet. But we continue to work on that. So FEMA is you know here working with families working with the different autism organizations

up on Beacon Hill to advocate for a change in how we determine eligibility. Because autism is sort of it's just one of many developmental disabilities that the department has to serve. But the unique nature of autism is such that in you know terms of testing in IQ you may be able to come up with a IQ above 70 but you're functionally not capable of caring for yourself so there's a lot of people in that gray area who have an autism spectrum disorder who test well but just simply cannot survive on their own because of the impact of the you know the social nature and the judgment and whatnot. CAROLYN RYAN going out there Lynn. Yes go ahead. Hi. I'm sorry I thought I heard you. I guess I just wanted to say something that was interesting about functionally disabled and that's where I think the key lies. You can have an IQ you numbers can mean a lot and they can mean a little. I know my son went to a school where there were

other children with other diagnoses but because they had a diagnoses that included mental retardation they had a door open to them to get all kinds of services. And can I tell you those children functioned at a much higher level than my son because my son had a diagnosis of autism and the word mental retardation was never used. Even while he was diagnosed when he was very very young because nobody knew what the future was going to be we weren't eligible for a lot of those services. I mean that question was asked directly to me by the lawyer for the state. If I had that terminology there. And you know but I think we need to look at this at a functional level. My son can contribute like many children to many young people. Contribute but he can't do it alone. You know he's going to need that. The job coach that can do the negotiating room we're not there he's going to need the person to put together a transportation piece. And like Fred said it's not a lot. We're not asking for the mone we're asking for just a little bit which I think is fair. We spent taxpayers My family's been here for generations pay

taxes this is and nobody's ever taken anything but one case and were denied. You just open the door for me to talk about the job coach because I wanted to give a specific example of what we mean when we talk about small support to families and to functionally to young adults who can function and can earn work at the beginning of the show you heard a clip from the film autism coming of age with Doug Doug has a job. Doug works at a hotel that he loves we're going to tell the tale he's well loved by everybody there he does an excellent job he's earning money. He's a taxpayer. And I want to let everybody hear this clip and we hear Doug's father talking about his son's job coach. Initially the job coach was important to Doug because it's very difficult for an adult with special needs to be considered equally with other applicants because most employers don't believe they can perform equally. So the job coach was able to help

bridge that gap and then address some of the learning and processing issues that adults with autism or adults with disabilities might have with him. So you just see that there was is this small intervention with Doug. If you read the film and by the way that came from the documentary film autism coming of age we see that the job coach asking Doug a few pertinent questions but pretty much after that he's doing his thing and he's loving his thing and his more importantly his employers are loving him. So there you have an excellent example of just how this can work for a little. Well you know I think that people have really must recognize that individuals who have intellectual developmental disabilities are contributors. They are contributors to their community the contributors to their employer their contributors to their neighborhood and yes all of us at times need services and supports. If we have a broken hip if we have a medical condition some of us well during all any of our lives will recognize that we need services and supports at some point in

time. That doesn't mean that we're not contributing on some other time in our lives. Individuals with Disabilities have the ability to contribute all required is just the right level of services and supports to enable them to continue to contribute. Lauren I wanted to ask you to respond to another example of small support in the film that was raised which is group homes for functional adults living together having someone come in just periodically to check on them but they're living apart something that Carolyn Ryan is stuck struggling with for her son with other adults like them and they're going to work and you know doing doing their thing it is this very viable and by the way those funds are paid for by Medicaid. So this is there for them. It is there. There are different group models and different group homes. I had the experience of having my son served in a group home and the cohort in the home was much older than him so it wasn't an ideal fit but at the time it was a

necessary step to take. And he was there for a year and a half. And that group functioned with a lot of support there was two staff people on time 24/7 but there were other group living situations group adult foster care where you can be in a sort of like assisted living. Position placement where you have some support during the day somebody checking in and you're able to pretty much be independent. There is right now my son is in a placement that's called shared living with another family. He lives with another family they provide the supervision that he needs and for him that was a better choice then that sort of group home with a lot of other people with disabilities because behaviorally that was difficult for him to cope with the behaviors of other people and his behaviors spiraled also. So living within a family he grew up living with the family he's comfortable living with the family it's what he knows and that is a nice placement for him and has worked out nicely for him.

So there's options if we start thinking in terms of small support which would be the point of this bill what's the chances Fred missile of this bill getting passed. Well I don't know. We're hopeful. A fan has supported that the arc of Massachusetts has supported the families of people living with autism its great disability law center supporting it. Obviously people who learn about this issue are very supportive and I would simply encourage them to contact their state House representatives and legislators to ask for up or down vote on. On the on the bill it is House Bill thirty five twenty seven it's gone through joint committees favorably reported out on to two committees I believe now it's in rules and we're hoping that a get referred positively in the rules and get a vote and this is not it would not represent a watershed member it's a cost neutral issue it's simply by going back to where we were in 2006 adopting an external

objective clinical standard and the American Association on intellectual and developmental disabilities would enable individuals who need services and supports to get it to get it. And and just because they get in title doesn't necessarily mean that they're going to get. With a significant amount of resources but at least they'll be a peace of mind with families knowing that when they do need the help the help will be there. That's the last word on this subject and thank you all so much for talking to me about it. We've been talking about aging with autism I've been speaking with Fred missile Oh he was just speaking. He's an attorney who focuses on special needs planning and elder law. CAROLYN RYAN she has an adult son with autism and Sue Loring the director of the autism resource center of Massachusetts. She also has an adult son with autism. Thank you all for joining us. And we continue the conversation with a look at how emergency crews and first responders are being trained to recognize the signs of autism. This is eighty nine point seven WGBH Boston Public Radio.

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online WGBH dot org. Welcome back to the Calla Crossley Show. If you're just tuning in we're talking about autism. I'm joined by Betsy Roche. She works with autism and Law Enforcement Education Coalition which is training emergency workers to recognize the signs of autism. Betsy Roach thank you for joining us. Oh it's my pleasure thank you for having me. So why was there a need to have a training program for first responders and emergency workers. Well back in 2003 family Autism Center received a grant from the Dedham institution for savings to bring up dentistry bought from autism risk and

safety management to the state. And we had him come to Curry College and in Canton there Milton I believe and he presented and training for police officers in dealing with crisis situations involving people with autism. Our approach our project coordinator Bill Kanada Captain Bill came out of Westwood fire department and also a founding parent of family Autism Center. He asked us what about firefighters about EMT and dentist simply replied What about them. So we realized that there wasn't anything out there and so Bill spearheaded this mission with a group of professionals and parents to develop a curriculum for first responders that was specific to autism spectrum disorders and dealing with crisis situations because really there was nothing specific to autism in particular for these trainings. Right now there's a special needs training component to fire and police and EMT but nothing specific quite to autism and what you see with a person. So those kind of spearheaded this program

with the support of the arc of South Norfolk. And yes we're going strong We've trained over 12000 first responders in the state of Massachusetts to date. So we know that about a million children and teens are affecting with the autism spectrum are on the spectrum for autism. What is the likelihood of what has been the likelihood that first responders like firefighters or police officers end up interacting with one of these teens or kids. Well a few years back to 6:00 came out that said that a person with autism was seven times more likely to be involved in a 9 1 1 situation than a typical typically developing population. Those numbers. Been updated but with the increase in autism going to one in 88 people today the likelihood is pretty it's going to happen that as a first responder you're going to encounter a call with someone who has autism.

So I understand the classes two parts you know first responders learned you know what it what the general care characteristics of a person with autism what the symptoms look like how people may exhibit them. And then second they learn how to interact so give me like one or two symptoms and tell me how an officer would or a firefighter would respond. Sure. What we do is we go in and like you said it's a two fold component so in the first hour of the training the presenter the consultant who goes in and trains the group is a professional in the field being trained so a firefighter is training his has a fellow firefighters a police officer is training his fellow police officers and they also have to have a loved one who's diagnosed on the spectrum so they have both the professional and the personal background. While they're presenting to their colleagues so the presenter in the first hour reviews the basic characteristics of someone with autism they go over the communication issues that a person with autism has. They go over physical some physical features that may be present or characteristics that may be

present in a person with autism such as flapping their arms. They talk about how they may not communicate verbally they may use pictures to communicate so that's addressed in the first hour and oftentimes the presenter will show pictures and video footage of their own child or their own loved one who has autism so it's giving a concrete example to the professionals being trained. And the second hour they go over situations that they will find the jobs the firefighters talk about going into a home where they've been called on for fire and they've been told that. Someone with autism is in the house so they know where they are trained and where to look. They are told look in closets look under the bed these people may be frightened. They're told that the person may want to go once they're out of the house and they're safe. They might want to go back in because to them that their bedroom is what's safe and so they may rush back into the fire so they're trained to get the person into a safe contained area with a loved one or with someone who knows them and can calm them down and keep them safe. Out of out of harm's way. So the program has been going long enough for you to have

some sense of you know what its impact is. Can you speak to that. What can you see those concrete results. Yes we can. We've gotten feedback from several different departments both police and fire and UMass that have had this training I mean one in Johnston Rhode Island for example. They told us that a week after being trained they called us and said that we received a call with someone who has autism. The training was the training that the lieutenant got from Alec were good they were able to go they calm the person down and that one call they they told us made the whole training worth it. There was a situation in Boston where the individual had autism. They were they were nervous they were upset. The EMT couldn't calm them down the police couldn't. Calm them down but one of the EMT said had training and was was on the scene and said you know what this looks like autism let me try and calm them down so rather than having to put someone in the back of a cruiser because they're out of control and it was they

were a risk for safety for themselves and others around them. They're about to get the purse and get them to the hospital. Family was able to be called in the situation just escalated and that's really what the focus of the program is is making sure that both first responders and people involved in the crisis situation are safe. Just in case someone is thinking oh this is another sort of Goody Two-Shoes program on the downside there been some some fatal interactions before with people who were not trained to see these symptoms or know how to interact. Yes it's devastating there's been to tuition's where people have been shot. People have one and one issue one characteristic that's reviewed in the training is that people with autism often have low muscle tone and so if there's a takedown of a police officer feels that the. Person is a risk to them or themselves. They will take the person down and because of that low muscle tone there have been situations where the stomach the chest cavity isn't able to get

contacts and able to breathe and so you know if they've passed away that way so you have to you have to know these situations you have to know what the characteristics of autism are. Take that extra second to just think about it and it kid it it could help you from having one of those dire situations. That's right you're the director of the family Autism Center and I just spent the first part of my show talking about families worrying about their adult children with autism. What kind of relief is this offered families to know that there is beginning to be some sensibility with people who are out in the world who might interact with their children. It's been huge for families because not only are we training first responders on how to better serve their community members. We're also spreading the word with the families. It's their job as parents as caregivers as staff and group homes as their jobs to also work with the individual with autism. It's their job to to train them and teach them what to do during an emergency situation if the fire

alarm goes off you need to leave the home practice that don't go back into the house until someone tells you it's ok. We tell people that you know what your local first responders know where you are let's go to the fire to. Say hi I am here I live here my child has autism so if you get a call from my house please be aware that my child has autism and is going to need in the know some special treatment if at all possible during the event of a crisis and so if families are relieved it open the door for communication for families to go and talk to their own local first responders knowing that first responders have some training so its been huge. Thank you so much Betsy Roche is a fascinating program and one that's so important. We've been talking about autism and I've been speaking with Betsy Roach She's the director of the family Autism Center which includes the Autism and law enforcement force meant education coalition. You can keep on top of the Calla Crossley Show dork slash Calla Crossley follow us on Twitter and become a fan of the Calla Crossley Show on Facebook today show was

interviewed by Jane pic produced by Chelsea Murphy and Abby Ruzicka our interne is Sloane pipe production of WGBH Boston Public Radio.