Guest Host: Sasha-Ann Simons

Special Olympics is the world's largest sports organization for children and adults with intellectual and physical disabilities.

Special Olympics is the world's largest sports organization for children and adults with intellectual and physical disabilities.

Transitioning to adulthood can be daunting. And for those with special needs, the process can be especially challenging.

Although the population of adults with special needs has skyrocketed, options for many education and occupational therapy programs shrink after individuals turn 21. For instance, in the next decade, an estimated 500,000 people with autism will enter adulthood, with nearly 424,000 on wait lists for residential services, according to the Autism Society of America.

So, how do individuals with intellectual and developmental disabilities –and their families– navigate the road to adulthood? And what resources are available in our region to help?

April is Autism Awareness Month. Learn more and get involved here.

Produced by Julie Depenbrock

Guests

  • Jillian Copeland Founder, "Main Street," an inclusive, community-centered residential development in Rockville, Maryland
  • Barbara Brown President, Jewish Foundation for Group Homes
  • Melonee Clark Outreach and Resource Program Administrator, The Arc of Prince George's County
  • John Bogasky Parent and Special Olympics Volunteer

Transcript

  • 12:00:11

    SASHA ANN SIMONSYou're tuned in to The Kojo Nnamdi Show on WAMU 88.5. I'm Sasha-Ann Simon sitting in for Kojo. Welcome. Transitioning to adulthood can be daunting and for those with special needs the process can be especially challenging. Although the population of adults with special needs has skyrocketed, funding for many education and occupational therapy programs dries up after individuals turn 21.

  • 12:00:36

    SASHA-ANN SIMONSSo how do individuals with intellectual and developmental disabilities and their families navigate the road to adulthood? And what resources are available in our region to help? Joining me in studio is Jillian Copeland. She's the Founder of The Diener School in Potomac and "Main Street," an inclusive community-centered residential development in Rockville, Maryland. Hi, Jillian.

  • 12:00:57

    JILLIAN COPELANDHi.

  • 12:00:58

    SIMONSBarbara Brown is President of the Jewish Foundation for Group Homes. Thanks for joining us, Barbara.

  • 12:01:03

    BARBARA BROWNGlad to be here.

  • 12:01:04

    SIMONSMelonee Clark is Outreach and Resource Program Administrator at The Arc of Prince George's County. Hi, Melonee.

  • 12:01:10

    MELONEE CLARKHi.

  • 12:01:11

    SIMONSAnd John Bogasky is a parent and Special Olympics Volunteer. Hi, John.

  • 12:01:15

    JOHN BOGASKYHi. Glad to be here.

  • 12:01:16

    SIMONSNow, John, I want to start with you. Can you tell us about your son?

  • 12:01:19

    BOGASKYAll right. My son is 27. He has intellectual disabilities. He does not have a diagnosis. He lives in his own apartment in Rockville Town Center. He works at the Smithsonian at the National Museum of American History 20 hours a week. He has a -- he lives in his own apartment. He lives with supports that he gets from DDA. He uses Metro access to get to and from his job at the Smithsonian, which he got through a program called Project Search. He is loving life. I mean, since he moved -- we never thought we'd be here. But when he moved out of our house he has not spent another night in my house since he moved out. He doesn't want to be there. He likes being where he is.

  • 12:02:06

    SIMONSSo he's quite independent?

  • 12:02:07

    BOGASKYHe's quite -- he has many independent skills and he's still growing them. That process doesn't really stop. But he's not fully independent.

  • 12:02:19

    SIMONSAnd we'll get to that a bit more in the hour. Jillian, you've talked about the importance of carefully navigating the 'Services Cliff,' right? And which is what we're talking about today. For listeners, who might not know, can you describe what that Cliff is and then what it means for individuals with intellectual and developmental disabilities?

  • 12:02:36

    COPELANDAbsolutely. So we often refer to the Cliff as something pretty scary, because I think it is for most of us. Or if we've already experienced it, it has been for you. The Cliff is when you turn 21 and you lose all state entitlements. So basically what that means is your schooling, your social outlets, your connectivity to community basically your anchor that you've had for several years now ceases and it's quite difficult for people especially for many people with disabilities. Transition is difficult anyway, but you've lost your connection to community. So not only are you isolated and socially disconnected, but your caregivers are also -- it's a very challenging time people.

  • 12:03:23

    SIMONSSo how does school and like aging out of public education, how does that fit into the Cliff period?

  • 12:03:29

    COPELANDSo you age out at 21 or so and the great thing about IDEA now is that so many people are very well prepared vocationally and socially to move on, right? Part of the issue is that there isn't a lot out there. There isn't a lot of comprehensive services out there for adults. So many have this great experience where they've been very well educated. But now this Cliff, there isn't a lot job opportunities or employment opportunities available for them.

  • 12:03:57

    SIMONSOkay. Now, Melonee, you work at The Arc in Prince George's County where you're responsible for supporting families as they are navigating this transition. So what advice do you give parents, who are coming to see you for the first time?

  • 12:04:10

    CLARKWell, we want to educate parents on the benefits. A lot of these programs you have to apply for state benefits. And so you have to have Medicaid in place and you have to know what benefits will open up the door for certain programs. So that's one of our key is to provide parents with workshops that help them understand, what do I need to apply for so I can get into certain programs? And so the early education of transition planning is so critical. So don't ever think that you can attend one workshop, one transition fair, one event and you can get all this information and process it. So we just try to guide families and tell them to stay tuned. Stay engaged. And continue to be active in this transition planning process.

  • 12:05:06

    SIMONSAnd Jillian mentioned the entitlement service. Can you explain, you know, what services exist for those that are younger than 21? Just so we understand what they are in fact losing.

  • 12:05:14

    CLARKSo when you're still in school you're in that transition planning process. And so you could access some of the -- the school system's transition activities. So let's give an example. The school may refer you to the adult rehab. In Maryland we call it Doors, the Division of Rehabilitative Services. Between ages of 14 and 22, you may enter into their pre-employment training services. So this is a great transition activity to help with that pathway to employment. And we know employment can also help with life skills. So that's one example of what you can do before that age of 21.

  • 12:05:56

    SIMONSI'm going to head to the phones. We're going to take a call from Stacy Herman in Baltimore, Maryland. Stacy, you're on the air. Hi, Stacy.

  • 12:06:08

    STACYHi. How are you?

  • 12:06:09

    SIMONSGood. What's comment or question for us today?

  • 12:06:12

    STACYI am Stacy Herman. I'm calling from Kennedy Krieger Institute and I was going to talk about our programs that we offer at Kennedy Krieger.

  • 12:06:22

    SIMONSAwesome. Go ahead.

  • 12:06:24

    STACYSo Kennedy Krieger Institute saw a need to support adults with disabilities. Kennedy Krieger is often known to serve pediatrics and with this need we started a neurodiversity at work initiative. From that initiative, we started three programs at Kennedy Krieger Institute. So we have Project Search at Kennedy Krieger institute, which is a 10 month transition program for individuals 18 through 24 years of age, which focuses on hands on job training. And the cornerstone of our program is that it is hands on at our institute in our in and outpatient centers.

  • 12:07:04

    STACYWe also started CORE Foundations at Kennedy Krieger Institute. CORE means Community, Opportunity, Respect, Employment. CORE is an approved agency through the Developmental Disabilities Administration. We knew Project Search was a 10 month program. And we wanted to ensure that there was supports for adults once they completed our project search program.

  • 12:07:30

    SIMONSOkay.

  • 12:07:31

    STACYWe also knew that CORE -- we needed to have social opportunities. So we started CORE Foundations Community Programming, which offers community integration program in what could be for, you know, fitness. And if they're interested in art that are evenings and weekends so that everyone has the opportunity to participate in programming.

  • 12:07:53

    SIMONSThanks, Stacy. So Stacy talked about Kennedy Krieger and their ways of transitioning folks. You know, she talked about the 18 to 24 year old stage. John, you have said that there are five ways to a successful transition to adulthood. Can you layout those five ways?

  • 12:08:08

    BOGASKYSure. There are five steps. There's five elements you have to put in place. First is an occupation. Most people it's an employment. I have a friend of my son's who is an artist, but you need an occupation. Second, you need independent living skills and with that are supports. So I put the two together because they're co -- they support each other. The third one is housing. You need to find a place to live and there's this whole different set of programs to learn for housing. Each one of these things has its own set of programs that you have to navigate as you transition to adulthood.

  • 12:08:46

    BOGASKYThe fourth one is social integration. These are folks that can't plan their own events, can't get around, have lots of obstacles, even more than the rest of us do to finding their friends and getting out there. So you have to help the need supports for that. And then the last one is advocacy. And that is the part that fills in everything behind -- you know, it keeps all those other things I just talked about going, but manages the medical care, gets their taxes down, all kinds of fill in the blank things.

  • 12:09:16

    SIMONSAnd we're going to take a deeper dive into some of those later, but all of those elements obviously sound incredibly important. You know, being able to successfully find employment, housing, ways to socialize. But that doesn't make it any easier to get there is what it sounds like. You know, where did you actually start with your son, John?

  • 12:09:34

    BOGASKYSo we started -- I want to second what Melonee said about going to these seminars. I mean, I have probably been to 100 of these seminars trying to learn all these programs. I was at one -- even though we had been at this 10 years, I was at one last week. We always started with -- we kind of had a principle with my son, what is he doing now and what is he doing next? So when he was leaving school our priority was employment. That's the first thing that we had to solve for him. So while he was in school we tried to find what was going to happen when he left.

  • 12:10:05

    BOGASKYAnd so we found Project Search. A different Project Search from the one Stacy mentioned. There's many programs around the country. This was one at the Smithsonian. And we applied for that. He was in. So the September following his graduation he did Project Search and lived with us. We didn't worry about housing. We still work -- we always work on independent living skills, but we didn't try to achieve that independence. It was employment first was our mantra.

  • 12:10:30

    SIMONSInteresting. So we'll continue our conversation after a short break. Stay tuned.

  • 12:11:02

    SIMONSWelcome back. I'm Sasha-Ann Simons in for Kojo Nnamdi. We're talking with Jillian Copeland who's the Founder of Diener School in Potomac and "Main Street" an inclusive community-centered residential development in Rockville, Maryland, Barbara Brown who's the President of the Jewish Foundation for Group Homes, Melonee Clark who's the Outreach and Resource Program Administrator at The Arc of Prince George's County, and John Bogasky who's a parent and Special Olympics Volunteer. We're talking about the 'Services Cliff' faced by individuals with intellectual and developmental disabilities.

  • 12:11:34

    SIMONSBarbara, I want to bring you into the conversation. Barbara Brown, you are the President of the Jewish Foundation for Group Homes, which supports more than 200 individuals across 70 sites in D.C., Maryland, and Virginia. Can you tell us first for those who might not be familiar, what is a group home?

  • 12:11:51

    BROWNCertainly. A group home is a collection of anywhere from two or three to five individuals who are living independently of their families, but creating essentially a family for themselves in this group home with the supports that they need to lead a independent, community involved, inclusive dignified life. And our commitment is to help people, because if you stay in the home with your parents by definition you're sort of always a child. All of us when we go home to our parents revert to old ways. And the key for so many people with intellectual and developmental disabilities is to see themselves as starting an independent adult life.

  • 12:12:39

    BROWNAnd so getting the appropriate kind of housing is critical and group homes is just one of the many options that we have. Our mission and our programs have outgrown our name in a sense, because we also have apartments. We have in home support, so those who have their own apartments, who are still living with their parents getting ready to try to find a place to live independently can get a support from our staff. And that's been a critical piece for a lot of people when they're in this transition period.

  • 12:13:16

    BROWNWhen we were about 25 years into our existence we realized that we needed -- that folks needed a program for after they left school. So we started something called the MOST program, which is Meaningful Opportunities for Successful Transition. And we have two locations now. We're in Montgomery County and Fairfax. And we're going to open in Loudoun in the summer. And what we do there is we have a yearlong program that has on the job -- I'm seconding what everyone else has said here. On the job training, but also training in all of those things that you don't think about that you need in order to have a successful independent life, transportation, grooming, how to get along at work, which is very different from how you get along with your friends and your colleagues at school. And all of those related skills so that when folks graduate from our program we've had a 95 percent success rate in placing them in fulfilling employment.

  • 12:14:15

    SIMONSYeah. That's fantastic. I want to take a call from Catherine in Potomac, Maryland. Catherine, you're on the air.

  • 12:14:22

    CATHERINEHi. I had a question. My sister who is a little bit over 40 -- my older sister has a developmental disability from a pediatric brain tumor she had. And she lives with my parents in rural Georgia right now. And I guess I just worry that as my parents are aging like what can I or should I be thinking about to help her? Right now she -- I mean, talk about that cliff. We really experienced that as a family, when she was out of the public education, you know, the public school system. And she had a job for a while. And then that job ended up dropping her for more full time employees. And so they've just had a hard time finding her a job and finding her appropriate placement. And so right now she's just living at home.

  • 12:15:14

    SIMONSGood question, Catherine. And it leads right into what I was going to ask you Melonee. You know, I'm curious. When you first sit down with a family, you know, how do they respond when you tell them about all these things that they're going to need to do, you know, to qualify for state funding, acquire housing. And, you know, can you address what Catherine just asked as well? You know, is it that much harder as they get older?

  • 12:15:36

    CLARKYes. If the conversation is not ongoing with families every year addressing that especially when there's siblings that live out of state that may take over the main caregiver role down the line, it is very daunting. And most people don't want to have the conversation. And that's kind of the worst thing that could happen for you not to talk about it. Even though it's not something that we want to talk about as parents when we're no longer around, but I think it's crucial to start figuring out will the love ones stay in that state or will they move to another state with another sibling.

  • 12:16:10

    CLARKSo that sibling can start looking into that state resources and benefits and start attending these events so that they become more familiar. We get a lot of emergency crisis type of calls in needed support. And they realize that they can't just go seamlessly into services when you're out of state.

  • 12:16:34

    SIMONSAnd I think that also speaks to what Susan wants to tell us. Susan is on the line from Vienna, Virginia. Hi, Susan.

  • 12:16:40

    SUSANYeah, hi. That's exactly what I wanted to say. I didn't realize, but you can't move. My child who is now 19, he can never move out of the state of Virginia or he goes at the end of the wait list at other states. And it feels so wrong. It seems like the states ought to cooperate. There ought to be a federal role benefit that you can move your benefits from one state to the other. And then we can't retire anywhere, but Virginia because that's where our services are. And even if we want to move to a lower income area in a different state, we can't because his services are here.

  • 12:17:16

    SIMONSThanks, Susan. You want to address that, Melonee?

  • 12:17:17

    CLARKSo at The Arc one of the things we try to concentrate on is that future and financial literacy planning, because you need to think about, will the person need to move to another state, because state's supports don't carry over. SSI, that's a federal benefit. That will carry over if you move to another state. But the other comprehensive programs, they don't. And so, I agree with her. That would be nice if each state respected that that funding source so that they could seamlessly move with their family member in another state.

  • 12:17:50

    SIMONSIt's definitely some opportunity to make some changes there. Barbara, your own child is living in a group home. How did you navigate that process and how did you find the right fit.

  • 12:17:59

    BROWNOh, it's a good question. I must say, the Montgomery County schools were fantastic. My son was at Rock Terrace, which is a special ed high school. And they gave us an array of options both for job coaches and support for finding employment and for looking at housing. And I also knew just from my community about some of the group home options. So we signed and went around and talked to people and looked well before he was 21. And put him on a wait list, because as Melonee says this is all -- just like politics is local. This is local. You have to know the county regulations. You have to know exactly where you are.

  • 12:18:44

    BROWNAnd to that caller, I mean, I would be calling the Georgia department of whatever, because you really need to know your local roles in any event. So we searched around and JFGH looked like the best option. And interestingly my son, Jared, first went into a home where there were a mixture of deaf and hearing individuals.

  • 12:19:04

    BROWNThat wasn't a good setting for him. And the organization found him the home where he's now been living happily for the last 15 years.

  • 12:19:11

    SIMONSNow I want to hear from all of you on this one. I'll start with you. Jillian, it's predicted that 500,000 individuals with autism in particular will enter adulthood in the next decade. So what can be done to improve residency outcomes for these individuals as well as others with intellectual and developmental disabilities? Do you want to start, Jillian?

  • 12:19:30

    COPELANDSasha that is really a pressing question for many people and that statistic is just people with autism, right, so not any other disabilities, which there are many many people?

  • 12:19:38

    SIMONSCorrect.

  • 12:19:39

    COPELANDAnd that number is also increasing. So around the country right now there are several initiatives, concepts, models that are happening, housing, residential models that are happening that are all different for all different kinds of people with different disabilities and abilities. And so there is some hope out there that lots of amazing things are on the edge, right? A big issue is obviously the cost of all of these. So we do need other stakeholders. We need government to help us and be responsible. And that is actually one of the initiatives that "Main Street" is working on.

  • 12:20:17

    COPELANDWe have a public private partnership with the state Maryland who has been incredibly generous in helping us create "Main Street," which is a housing model. It is a 70 unit apartment building in Rockville town center. And 25 percent of the units will be designed and designated for adults with disabilities, 75 percent of the building is affordable, which is critically important, right?

  • 12:20:39

    COPELANDSo employment is obviously an issue. Fifty percent of people in Montgomery County with disabilities are employed. And that's one of the highest numbers around the country. So that means that 50 percent of the people around the county are not employed, right? So it's incredibly problematic. And that's global. That's a global statistic and a global problem.

  • 12:20:58

    COPELANDThe two biggest barriers for living independently are lack of affordability and lack of accessibility. So in the 70s when the ADA was -- the Americans with Disabilities Act was passed, which is amazing, but that also means that buildings that were built before that are not accessible to many people that have mobility issues. So there are lots of problems. There are lots of solutions all around the country.

  • 12:21:24

    COPELANDOne of the ways -- if your sister is in Georgia, or if your family members are living in another state, there is a great resource that we have been using and "Main Street" is a part of. It's called the Autism Housing Network. And there is a website. If you Google "autism housing network directory" you will find it. And it shows you concepts and models of different types of housing all around the country. So if you're looking for something in Georgia or anywhere around the country, you can click on there.

  • 12:21:49

    SIMONSWhat's that website?

  • 12:21:50

    COPELANDIt's called Autism Housing Network.

  • 12:21:52

    SIMONSOkay.

  • 12:21:53

    COPELANDAnd it is Madison House, which is a local organization has created it. And it is really fabulous and a wonderful resource for people, who have people of state that they're looking for some residential options.

  • 12:22:05

    SIMONSPerfect. And I think we have the link on our website as well to share with folks.

  • 12:22:08

    COPELANDGreat.

  • 12:22:09

    SIMONSAnyone else want to weigh in on improving residency outcomes? How about you, John?

  • 12:22:13

    BOGASKYWell, I think affordability is key. I would recommend to anybody at any age that they put their child on the wait list for a housing choice voucher. It might take 10 years given the length of the list. But 10 years is still better than never. But the thing that people can do today is work on their live skills that their kids have. Can they do their own laundry? Can they run the dishwasher? Can they reheat food? My son, he lives on his own. He doesn't really cook. He reheats. That's basically how he cooks, but it works. He does it on his own. Even with the supports there, we encourage the supports to, you know, let him be as independent as possible. But everybody -- all the families can be working on those skills today, because that's also part of getting out of mom and dad's house.

  • 12:23:01

    SIMONSWell, that's what I was going to ask next is, you know, you can weigh in maybe Melonee on, what options there are for teaching those skills that can help someone live more independently?

  • 12:23:12

    CLARKOne of the things is in school is adding those goals into the IEP, into Individual Education Plan. And also connecting with communities stakeholders, because there's often community programs, when the child is in elementary, in middle school. I just can't say enough that early planning of life skill planning, employment, it's critical in the future planning, the estate planning piece.

  • 12:23:36

    SIMONSJillian?

  • 12:23:37

    COPELANDI also believe collaboration is critically important. So, if your child, young adult, or older adult is working with several different people, job coaches, therapists, educators, everybody needs to be on the same page and comprehensive services for adults is quite a challenge. But to prepare our younger kids, one of the things that I have done -- my son is turning 20 in May. And one of the things I have done to connect school and home and other life coaches that he's working with is create a Google doc that everybody can look at. And we've placed independent skills from activities of daily living to socialization, to all different kinds of skills that he's going to need to lie independently.

  • 12:24:21

    COPELANDSo we all have a document that we're using that we're kind of rating to see where his skills are. And what skills he will need to live independently and then having a note section where we can all say, hey, this is happening, or this isn't. Sometimes with our kids -- for example, my son, it may take years for him to learn how to do laundry. It may take years. So, earlier planning is better.

  • 12:24:42

    SIMONSYeah, and I want to read a Tweet from Lindsey. We have a Tweet that she says that my brother is 31 and has Down syndrome. He works at Wildflower Bakery in Chantilly, Virginia and loves his job. I think more employers in our area should see the benefits of hiring people with disabilities. We all have skills and ways to add value when given the opportunity. Isn't that what we're getting to here, right?

  • 12:25:05

    CLARKAbsolutely. Absolutely.

  • 12:25:07

    BOGASKYAnd I would think -- we were talking about life skills and employment. I think what I find from being a Special Olympics coach is you've got to get the parents to raise their expectations. They've learned what their kids can't do, and they're worried, they don't want to take risks. You have to raise their expectations. I'll say this even about myself. Our son has surprised us with things, you know, he probably could've been doing sooner, that we didn't let him.

  • 12:25:31

    SIMONSCan you give examples?

  • 12:25:33

    BOGASKYWell, I'd say even living in his own apartment. I mean, he took to that so fast, and we didn't really -- we thought he'd be nervous or upset. Nope, he was ready to go. He was ready, and never came back. I mean, the only times he's come back is when we have, like, a 3:00 a.m. flight, because we're going somewhere. He says, no, we're not picking you up.

  • 12:25:51

    BROWNAnd I think transportation is another big area where parents are so anxious, that they don't want their child to get on the Metro or they're afraid that they're going to get hurt, or whatever. And I have found that, by and large, the bus drivers, the Metro employees are about the most helpful people in the world. And if somebody's card doesn't have any fare on it, they figure out how to teach them. And what you really need to do is go back and look at everything that you need to do to be, let's say, a successful employee and break it down into the smallest piece. Because each of those pieces has to be -- it may come naturally to us, we don't even think about it, but each of those has to be taught.

  • 12:26:32

    BROWNAnd I know, even in Jerrod's home, the staff are constantly thinking about ways to find jobs and chores and tasks that the residents can do for themselves, so that they are making their own decisions. And just like all the rest of us, they're learning by trial and error.

  • 12:26:53

    SIMONSLet's take a call. We've got more Maurice on the line from Washington, DC. Hi, Maurice.

  • 12:26:58

    MAURICEHi, Ms. Sasha, how are you?

  • 12:27:00

    SIMONSGood, good. What's your question today?

  • 12:27:03

    MAURICEI'm just loving this show, and I'm loving all the folks you got onboard.

  • 12:27:06

    SIMONSThank you.

  • 12:27:07

    MAURICEThey're speaking truth and power. I'm also disabled. I'm a retired teacher. I worked in radio. I've also done so many other jobs, as answering telephones. So, nothing is impossible for people with disabilities, unless folks out there refuse to give them the opportunity. Regarding transportation, I think that's very, very important. I want to say that some of the decisions that have been made for people that are disabled are made by those who are not disabled, and therefore it causes a problem. They don't the lives of people that are disabled, because they don't understand what it takes to survive in the world of people that are mostly nondisabled.

  • 12:27:56

    MAURICETransportation, let's say -- can I use one of your guests as an example? He talked about his son.

  • 12:28:06

    SIMONSYeah, that's John.

  • 12:28:07

    MAURICEJohn, thank you. If John's son was to travel from the Washington or Maryland route there to Baltimore, well, in the DC area, we have what is called Metro Access. However, when you get to Baltimore, you have to get into another system called Mobility. My question or my suggestion is, is it possible that for people that are disabled, no matter what state they go to, they should be able to...

  • 12:28:43

    SIMONS(overlapping) Use transit?

  • 12:28:44

    MAURICE...transport to whatever the system is in that state without having to sign up for it? Because if you recognize as disabled in one state, nothing changes when you go to another state, as far as your disability's concerned.

  • 12:28:58

    SIMONSRight. And that brings us back to what we were mentioning earlier. Thanks, Maurice. You know, Barbara, it looks like you want to weigh in, there.

  • 12:29:03

    BROWNWell, yes, only in that, you know, we all -- I mean, as Melonee said, you know, the federal social security benefits will carry with you wherever you may be. But, otherwise, the laws about how you get residential supports or in-home supports -- and I know at JFGH, we have people in Virginia and in Maryland, and it's completely different, the way that the direct support professionals are reimbursed, and everything. So, you need agencies and organizations that understand each state, and often each county. And that's just the patchwork that we all live in. And, agreed, it can make the transitions jerky and difficult, but you've got to navigate it.

  • 12:29:47

    SIMONSYeah, it's definitely a challenge. It really seems like to navigate the services cliff successfully, you need time, you need money. So, I'm wondering what you suggest, Melonee, for families who don't have those resources. You know, where do they turn, and what's available to families who are operating on a tight budget?

  • 12:30:06

    CLARKSo, we ask families, please attend our seminars. One thing about the seminars, you have expert an guest who's presenting about a topic, so it gives you a thorough knowledge. You can meet that expert guest. But also, you get to network with other families. It's critical, because other families are your best way of networking and identify what are some of the challenges, what are some of the successes. So, trying to build that new network of families who may have already transitioned out of school services, and those who are currently at the same pace that your family is at. Those are the, I think, critical things that we've got to do as families. Do not hesitate.

  • 12:30:48

    CLARKFamilies hear all of this information, and they get nervous, and they halt. And that's the worst thing that you can do. So, just continue to learn. There's transition guides that are out there. Metro has a lot of information. So, a lot of times, people just hear that, oh, Metro Access. I'm not going to do it. But go onto the Metro Access website, download the guides, get that service. It's just critical to know every benefit and to take advantage of it.

  • 12:31:13

    SIMONSQuick point, Jillian?

  • 12:31:14

    COPELANDAnd I would say do it ahead of time, right, not when you're in a crisis situation. There are fairs. Like yesterday, for example, The Jewish Federation held a fair for the Montgomery County transition work group. I was there. I met so many different people I walked around, I asked different kinds of questions. When my son is 21, what do I need to be doing? That's really, really important. For Main Street, one of the pillars for us is that we have a membership. And so we have almost 1,300 members that have joined for social events, educational events. And, actually, John's speaking at our May event on housing. How do you obtain housing vouchers? What does that look like?

  • 12:31:49

    COPELANDAll of these processes are very difficult to navigate, and they're all separate. Right? So, it really helps to talk to other people, like Melonee said. Talk to parents who have been through this process. That is...

  • 12:32:01

    BOGASKYNumber one, talk to parents, other parents.

  • 12:32:04

    BROWNBut I would say the other thing is that people should particularly apply to the Development Disabilities Administration if they're in Maryland, because if you have a disability that began before you're age 26, you can be qualified for services. And in terms of your question about people who don't have enough money, if you have the DDA certification for support, and then you get into a group home, the cost is not -- it's related to your income, but it's capped at quite a low level, like $300, $375 a month. So, you should not feel intimidated by the system. JFGH has residents of all economic levels.

  • 12:32:50

    SIMONSYou're listening to the Kojo Nnamdi Show. I'm Sasha-Ann Simons, WAMU's race and identity reporter, sitting in for Kojo. We'll continue our conversation about the services cliff in a moment. Stay with us.

  • 12:33:19

    SIMONSI'm Sasha-Ann Simons, sitting in for Kojo Nnamdi. I'm talking with Jillian Copeland. She's the founder of the Diener School in Potomac and Main Street, an inclusive community centered residential development in Rockville, Maryland. Barbara Brown, who's the president of the Jewish Foundation for Group Homes, Melonee Clark, who's the outreach and resource program administrator at the Arc of Prince George's County, and John Bogasky. He's a parent and Special Olympics volunteer. We're talking about the services cliff for individuals with intellectual and developmental disabilities. John.

  • 12:33:49

    BOGASKYSo, picking up on where we just left off, I think the single -- for families in Maryland whose children are not yet 21, the most important thing they can do is apply to DDA, so that they go into the transitioning youth program, because that brings them into adult benefits without the waitlist. And the way you should do that is you should go to the transition teacher or coordinator at your son or daughter's school, and you make sure that they're working with you to make -- if only one thing happens, make that one thing happen.

  • 12:34:20

    SIMONSAbsolutely. Let's go to the phone lines. We'll talk to Greg in Bluemont, Virginia. Hi, Greg.

  • 12:34:27

    GREGHello. How are you doing?

  • 12:34:28

    SIMONSGood, good. You're on the air. What's your question?

  • 12:34:31

    GREGYeah, so, my wife and I run an organization called the Farm Less Ordinary, and we are a 51C39 profit. Our mission is to provide employment to adults with developmental and intellectual disabilities. And we farm and we sell produce at farmers markets, and we also have CSA. My comment is just that I just don't think there's enough employment opportunities for folks like we have (unintelligible) was the inspiration for the farm.

  • 12:34:59

    GREGTypically, about 81 percent of the adults with developmental and intellectual disabilities remain unemployed, and 68 percent report that they've had really little training or advocacy towards getting a job. So, a lot of times, you know, they're aging out of the system at 22, like you're talking about. And yes, we need all the services, but I really feel like employment is the lynchpin to the equation. Because even with the services, which are desperately needed, the waivers and housing vouchers and all kinds of things like that, we also need to, you know, really integrate folks into our employment workforce because, you know, in not doing so, we end up socially excluding them and marginalizing them, and oftentimes their families.

  • 12:35:41

    SIMONSYeah. Good point, Greg. And that leads right into what I was going to transition to, Jillian, the hard part: getting a job. You know, you said that only 50 percent of people with disabilities in Montgomery County, in particular, have jobs. Why such a low number, and what are the challenges and barriers to employment?

  • 12:35:57

    COPELANDI think it's really sad. That is such a low number, and it's one of the highest employment rates for adults with disabilities around the country that I have found. Why such a low number? I think the employers just haven't really caught up, right? I think that the information that needs to get out is that when you hire people with disabilities not only do you have a higher productivity rate, but oftentimes, you see a culture shift. People are happier. People are working. You hire somebody with a disability, they're there on time. They rarely take days off. They have very consistent work products.

  • 12:36:36

    COPELANDAnd I think that's really about education, that we have to get out and educate adults to say, hey, we need full inclusion, whether it's residential living or employment opportunities, community-based programming. We need to include all kinds of people with all kinda of abilities.

  • 12:36:54

    SIMONSJohn and Melonee, where can someone who's looking for a job find the right training services? Melonee, do you want to start?

  • 12:37:00

    CLARKSo, at the Arc of Prince Georges County, we have employment services which help with job development, job searching, job placement. We also have a project search that our students who are still in school can apply to be in part of our project search. Another key thing, parents' expectations, that they start doing job responsibilities at home, but also looking at volunteer opportunities, so students can start to realize, yes, I like working outside, no, I don't like working outside. Yes, I'd like to have an office job. So that as they're transition planning portfolio, they will show that they have experience. So, as they move into adulthood, that they say, I've worked a job before.

  • 12:37:40

    SIMONSAnd John, you had named occupation as one of those keys to a successful transition to adulthood, earlier. Why is it so important, particularly to a person with intellectual and developmental disabilities?

  • 12:37:51

    BOGASKYWell, I think an occupation defines all of us. It defines who we are. It gives us a purpose to our day. And if you don't have that, you're a bit aimless. And so that's why I say occupation employment is how most people have an occupation, but not the only way. But that's why it's so important. I think the thing, when you're in school -- I mean, we leaned on our school to get my son more internships, spend more time doing vocational things, less time doing educational ones, because we felt we knew where this was going. And then we had a very short journey, because we went straight from school into a project search at the Smithsonian, and that turned into a federal job for him.

  • 12:38:33

    SIMONSExcellent. Barbara.

  • 12:38:34

    BROWNI think that, to follow up on what Jillian was saying, a lot of the reason that individual disabilities have a hard time is the ignorance and the fear of the employers about what these folks will be like as employees, and that they'll be impossible to supervise, or something like that. These are total myths. And, in fact, if we could just, whether it is through internships, like in our Most Program, we have people placed, and we have heard from the employees in these organizations that their eyes have been opened. Not only to the culture shift, because it does yield a more inclusive, happier workplace, but also to the capability, the dependability, the hidden talents of many individuals with autism and other disabilities that wouldn't be obvious, perhaps, at a typical job interview.

  • 12:39:27

    BROWNSo, really, the key thing is whether you get a job coach, or you start to think strategically about what is it that your child can do that people may not realize just by talking to them for five minutes, and then looking for the kinds of opportunities that take advantage of those skills. And, hopefully, that will help the employers, you know, take that jump.

  • 12:39:50

    SIMONSI think that's what Karen from Rockville, Maryland wants to add to, as well. Hi, Karen. You're on the air.

  • 12:39:55

    KARENHi. The first helpful comment of the whole show is been what I just heard. My daughter has autism. She -- can you hear me okay?

  • 12:40:06

    SIMONSWe can.

  • 12:40:07

    KARENOkay. She has been through every job internship program under the sun. She completed the GMU Life Program, which is an intense program of independent living, job training and academics. Employers are rejecting her right and left after a five-minute interview or either by phone or in a distractive place. They have no idea. They're not willing to learn. Corporations advertise that they hire disabled, but they really don't. They're not willing. This has to go to the government level. I've already spoken with a county councilmen. This is way past -- a way bigger issue. We've used job coaches, and the job coaches don't know what they're doing. So, that's my statement.

  • 12:40:59

    SIMONSThank you, Karen. And, Barbara, I want to go back to, you know, part of what you mentioned, as well, you know, sort of talking directly to these hiring managers. You know, what should -- and anyone else who wants to weigh in, what should people know about hiring people with intellectual or developmental disabilities? Because it seems like there's a disconnect, there.

  • 12:41:17

    BROWNYeah, there is a disconnect. Well, I think the first thing, it's a little bit analogous to what we've been talking about in other areas. They have to think about the application process itself, and is it user-friendly to somebody who isn't going to be able to walk in, you know, keep their anxiety under control, perhaps need an environment where there aren't distractions. And a lot of our children are very -- change in routine is very difficult for them. So, you want to try to have maybe a pre-interview, or some event to get people together and talk to them all about what the jobs in this place -- I mean, I think employers need to be thinking creatively about ways that they can welcome these applicants.

  • 12:42:01

    SIMONSJillian.

  • 12:42:02

    COPELANDI also think that what employers don't know, because they haven't been educated, is actually what these job coaches do. So, if you're a job coach with Most or Jessa or the Ivymount School, they are going out to see what the needs are in the business. They're not creating another spot for someone with a disability. They are coming out. They're doing a needs assessment, and then they're looking at the population of students or interns or prospective employees, and they're saying, okay, this person can do this job really well. And that's how they match.

  • 12:42:35

    COPELANDAnd not only do they match somebody with the right skillset, but then they train them, and they're there. They help them with soft skills, which are often missing or needed. And they help train people in the businesses, as well, so they can understand how this person works. And so they create this environment, and then they kind of fade out. And I think that's the important thing, that then that's the key to success for both employer and employee.

  • 12:43:02

    SIMONSAnd in addition to that, are there particular jobs or fields well-suited to employ people learning to transition to independent adulthood?

  • 12:43:12

    BOGASKYYou know, the disabilities are so -- the mix of disabilities and abilities are so wide, that, no. Because it depends on who's in front of you and what their mix is.

  • 12:43:24

    SIMONSIt's very individual, right?

  • 12:43:25

    BOGASKYYeah, very individual.

  • 12:43:25

    BROWNWell, my son works for an organization called Service Source in Virginia, but they place people in Virginia and Maryland. And the way they do it to unify the services is they actually employ -- everybody employed there is an individual with a disability, a wide, wide range, and a lot of veterans with disabilities, also. And then they go to the employer, whether it's the public employer -- my son works at the Department of Agriculture through them -- or private employers. And they find the range of jobs that will be best suited to the particular individuals. And then they provide the job coach, so that there's a unified approach, and also so that somebody doesn't get fired just because they do something impulsive one day. They understand their employees.

  • 12:44:10

    SIMONSA very important piece. John, you mentioned this earlier, but you are the parent -- or, you are a Special Olympics coach.

  • 12:44:16

    BOGASKYYes.

  • 12:44:16

    SIMONSTell me how the Special Olympics affected your son's life.

  • 12:44:21

    BOGASKYWell, I think I had those five things before. The social integration is what is most valuable, there. That is a place -- he's been in Special Olympics since middle school, but that is a place where he finds his friends. And I'm in favor of inclusion. I love inclusion, but not at the expense of hanging out, also being friends with your peers. And his real buddies are other people that are like him that have disabilities. And so Special Olympics is a place -- and then the people that he sees on the teams he's on leaks into all the other -- because we see them at other places. So, it become part of, you know, his group that he hangs out with or sees once in a while.

  • 12:44:58

    BOGASKYAnd so that -- you know, separate from the sports and the competition and the coaching and achieving skills you didn't think you could do, it's that social aspect at Special Olympics that I think has the most lasting value. And I have athletes, you know, that are up into their 70s playing Bocce, in particular. So, you know, it really is all ages.

  • 12:45:19

    SIMONSWhat is it about that crucial social piece, Melonee? Like, why is that so important?

  • 12:45:23

    CLARKOh, my goodness, because it's important to everyone to have that social -- it also helps you get employed. So, when you have a good social network, you have a better chance of being employed. You're healthier. You just have a life. And so that's one of the key things that we often forget about when transition planning, is does this person have activities? Because a lot of the activities was surrounded by their school life. And so when they transition out, parents don't think about what's going to happen after they get home from their job, on the weekends. A lot of their friends maybe lived in a different part of the county or outside of the county where they went to school at. So, social skills, social skill training, just having a social leisure recreational life, crucial.

  • 12:46:08

    SIMONSCan group homes help with that social piece?

  • 12:46:10

    BROWNI was just going to say, one of the key advantages, whether you're living in one of our group homes or in the apartment program is that we have programs on the weekends. And whether people want to go to religious observances of whatever sort -- we're nonsectarian -- or whether it's fairs that have a, you now, sort of educational piece to them that can help people, or just going to the mall and having lunch and window shopping, just like everybody else. And so it's an absolutely critical piece of what we provide.

  • 12:46:44

    SIMONSThere is so much more that we could say here, but I want to end the show with some parting words of advice. So, very quickly -- we don't have a lot of time -- for any families that may have just discovered that their child or their sibling has special needs, what wisdom would you want to impart? John?

  • 12:46:58

    BOGASKYStep by step. It's a ten-year journey from 16 to 26, or even longer. So, don't try to boil the ocean. Focus on a couple of things that you need to do now, and do them.

  • 12:47:11

    CLARKAll right. Start early. Involve as many community members, school educators. Create a vision, and don't forget to apply for everything. Even if you get turned down, please apply for all benefits.

  • 12:47:26

    BROWNWell, I think what I'd say is think about the really positive ripple effect it can have if you place your child in a great independent living setting, or something. It eases the parents' minds. It eases the siblings' minds. It teaches their friends and relatives that there's a lot to do. So, it's a huge benefit.

  • 12:47:46

    SIMONSAnd, quickly, Jillian?

  • 12:47:47

    COPELANDI would say have hope, right. I think that we are in a shift right now, and this is our time, new housing options, new employment opportunities. And just be hopeful and be your best advocate. Get out there.

  • 12:48:00

    SIMONSJillian Copeland, Barbara Brown, Melonee Clark and John Bogasky, thank you. Today's show was produced by Julie Depenbrock. April is world autism month. If you're seeking resources for navigating the services cliff that we've been talking about this hour, head to our website. We've compiled a list of resources on today's show page. Coming up tomorrow, we'll sit down with Metro's GM to discuss what passed in this year's budget and what didn't. Plus, what does the gender pay gap look like in the Washington region? Join us tomorrow at 12:00. I'm Sasha-Ann Simons, sitting in for Kojo Nnamdi.

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