Female Announcer: This is Special Needs Long Island, a radio broadcast dedicated to the special needs community, right here on Long Island. Bringing you the latest news affecting special needs families. Along with information from organizations and professionals practicing in the field of special needs.

Now here are your hosts, Jeff Silverman and Ellen Victor.

Jeff Silverman: Good morning, and welcome to this week’s Special Needs Long Island. The radio program focused on the special needs community where we’re on every Sunday morning, from 9:00 to 9:30, on 540 AM WLIE and streamed at wlie540am.com.

Jeff Silverman and Ellen Victor, where we bring you news, information and guests involved in the special needs world. Good morning, Ellen.

Ellen Victor: Good morning, Jeff.

Jeff: One of the things that we wanted to touch upon before we focus on our guest for this week, which is Steven Vernikoff, the executive director of the center for family support.

We wanted to do a little update, since this is one of our shows that’s towards the end of the year, on something that’s been in the forefront of planning for the past year or so — we’re pretty much on the anniversary of the legislation — and that is ABLE Act.

Ellen: Achieving a Better Life Experience.

Jeff: I remember when we first started back on the show earlier this year when we were speaking about that. We were pretty optimistic that things were going to be by this time up and running and people were going to be able to open up these ABLE accounts.

Why don’t we do a little update on where things are, and for people listening who may not be familiar on the ABLE Act, what it actually is?

Ellen: In June of 2015 — that was six months ago — both legislatures in New York passed this law unanimously, which is why we thought that. This has just been sitting on Governor Cuomo’s desk since then. Really, what it is, is that we work with special needs trusts a lot. Very often, there’s a small amount of money not worthwhile going to court or setting up a special account.

Congress decided that perhaps it would be good for people who are disabled, especially those collecting SSI who are only allowed to have $2,000 in the bank, to have a way to have a little bit more money.

Jeff: I know with these accounts, when we first heard it, we thought everything was going to be great and there was going to be no drawbacks. We’ve learned, as far as legislation’s involved, that there are some drawbacks, some positives, but some of the drawbacks.

Ellen: Some of it is just that you cannot have a lifetime amount of over $100,000 or they put your social security on hold. The biggest issue that we deal with is that it’s a Medicaid payback trust, so at the end of the disabled person’s life, whatever is left in that account needs to go to pay back any Medicaid that they have taken.

Jeff: Yeah, depending what it is. We’re really advocates that it will be a good tool. It really has to be managed in the right way and neither of us think that it should be the total level of planning.

Special needs trusts are going to be important for lifetime needs going forward. I look at these as almost a good place to put the birthday money.

If your child’s making a little money and you want to put it away to keep your asset limit at a certain point, because this payback issue is something that people aren’t going to think much about it now, but at some point it’s a very strong negative on putting the accounts together.

Ellen: Sometimes a little extras in a child support can go into a special needs trust. This would probably be a good place for that as well, and absolutely.

The other problem that I find many of my families are objecting to when I talk to them about this is that you can only take it out for qualified disability expenses. There’s really much less flexibility on how you can get the money out, too.

Jeff: I just read this week — and that’s why I want to speak about it a little bit — is that it’s getting a little closer. One of the issues is getting the IRS to get their provisions together that are going to match with what the other branches of government were looking to do.

One of the things that I just read is that they are giving in on necessary needing aid, almost like a medical note or medical examination to have someone eligible for it. They want to make it a little easier.

From what I’ve also read, there are couple of states that will be getting close to that, or already soliciting bids for some product providers. It’s one thing for the state to have these accounts. Now, they actually have to have an investment type company be there to administer it, similar to the college 529 accounts.

Ellen: I believe Florida is really close. They actually have a date that this is supposed to be implemented, but I’m not quite sure how they’re going to be able to do that without the regulation.

Jeff: We’re going to be on top of that. You’re going to hear on future shows. When we get a little more information, we will definitely bring it out to the audience.

I like to to move on to our special guest that we have in the studio today. We have Steven Vernikoff. He is the Executive Director of the Center for Family Support. They are a non profit service agency that provides individualized support services and programs for individuals living with developmental disabilities, and for the families that care for them.

Steven, welcome to the show.

Steven Vernikoff: Thank you. Thank you for having me.

Jeff: Oh, it’s our pleasure. Tell us a little bit about the Center for Family Support, the history of it, some of the things that they do.

Steven: The Center for Family Support was founded 61 years ago by a group of families who were seeking to get help in raising their children with the developmental disability at home.

Today, one of the important thing we do is we continue that mission. We provide in-home services to some 750 families each week to help them raise their child with a developmental disability at home, and help them deal with some of the stressors that that creates.

Jeff: When you’re doing this, are most of service provided right in the home? Is that what you…?

Steven: Right in the home. A staff member of the Center for Family Support goes into the home and will either take a person living there out of the home to do something fun in the community or teach them skills.

For example, there might be someone that cook will teach a teenager how to cook, how to care for themselves, how to care for their rooms. It allows the parent to help the child without disabilities do their homework or do shopping, which is to relax and take it easy.

Ellen: How wonderful, all about achieving independence for our disabled love ones.

Steven: Yes. Our goal is that people should not have care that they don’t need. They should be as independent as they possibly can be, living like you and me.

Jeff: You’re dealing with so many families, which is a wonderful thing, 750 families a week — very labor-intensive. You must have a lot of people involved in your organization to be able to attend to all the families.

Steven: Yes. We have supervisory staff who keeps in constant contact with the families, to make sure that the families are happy with what is happening. On an average day, it’s 250 households that we’re in. When you have that many different people walking in, you have to be careful about the quality and make sure that everything is going well.

Jeff: Do you generally look to have a one-on-one relationship with the family, where this particular person that’s going there is it the same person that’s generally going to be going there, week-to-week, or how many times a week they go?

Steven: Absolutely, you don’t want to have many different people walking in. We also make sure by the way that when we start with the family, that the worker that we provide is interviewed by them and gets their “OK” before they start.

You want the family to understand that who walks into the home, is going to be the part of their home is someone that they want there.

Ellen: What a great comfort level for them.

Jeff: What ages do you serve?

Steven: We’ve served relative newborns, months old, up to senior citizens. It depends on if somebody has a need. When the diagnosis is given that somebody has a development of disability, generally it’s life-long services that a lot of people need.

Jeff: When people are served by your organization, are they generally referred there? How they do they get to the Center for Family Support?

Steven: They may be referred by other people who are receiving services from us. They may be referred by the city or the state of New York, the state of New Jersey. They may be referred by other provider agencies who aren’t able to meet somebody’s needs.

Jeff: I know there’s obviously costs involved. How are the programs generally funded? If I have a child with special needs and we’re looking for services, what do I have to do as parent to pay for all this? How will that get taken care of?

Steven: Most of our funding comes through Medicaid. The child has to become eligible for Medicaid. It’s complicated and we have staff who would help the family do what’s necessary.

Ellen: You have Medicaid service coordinators that help fill out applications and so on and so forth?

Steven: Yes. It can be daunting dealing with government, so we try and make it easy for the family.

Jeff: Especially with younger children, because a lot of times the schools are involved with that. You have to get involved to get the children qualified. Or is it through waiver programs?

Steven: In the early stages, until the child hits school — in New York city at least — the city pays for this part of the plan. Then when they hit the school age in New York they would go to the office for people with developmental disabilities and that’s how they would get services. In New Jersey it’s the Office of Children and Families that would…

Jeff: With the care that you provide, is this something that will take someone from childhood as long as they need it, or are there point where you are no longer going to provide services? Or you could take this throughout, for all their needs at different levels?

Steven: As long as someone is eligible for services and need services, we will give them the services they need, if they want us to. We have, for example, a group home where we started off when they were just children and now with the Alzheimer’s, we are still providing the service and will continue to.

Jeff: Speaking of the group homes, because housing is always such a huge concern, children are getting older and parents are getting older. We talked a little before the show that you operate and manage different group homes, could you speak a little about that and where they are?

Steven: We not only operate group homes, we operate a range of living services. A group home is 24 hours, 7 day a week care. Not everybody needs that. Some people need a few hours a day. Some people need need occasional support.

It’s important that people live in the right setting. The group home, we operate them throughout the five boroughs of New York City, we operate them in Westchester county, we operate them pretty much from mid Jersey to northern Jersey. For those people who need that kind of care, we provide for them.

Housing, as you indicated, is the big issue here. It’s very difficult for families to keep their child at home for long terms. The child ages, the parent at 70, 80, they have a 40-year-old. It becomes beyond a physical capability. There is a huge problem with housing. There just isn’t enough of it.

Jeff: Also with the government cut backs, it’s very difficult with the new housing starts coming up. There’s such a huge demand for it. We always hear about these list of people waiting to get on, and to get to homes. It’s really crisis level.

I know you provide a lot of the home services, and that’s a big part of what you do. Are there any overnight kind of things, because when you’re speaking respite. Is this more so, someone comes during the day?

Steven: It’s usually during the day. You have a situation where, as a single parent, working, school ends at three o’clock, they’re not going to get home until six o’clock. That’s when we’re there.

There are also issues of where it’s not a single family, but there are other children involved. A lot of it is during the day. We can on occasion provide overnight, in a crisis. That tends to be more unusual. Though there are some overnight respite homes on Long Island and the city that can meet that need.

Ellen: It’s wonderful. Sometimes people just need a break.

Steven: Yeah, and need it regularly, and routinely need care for their child. They want to keep the child at home, but they can’t do it without some help. They don’t want to place them in a group home.

Jeff: Are there any day centers you have where people will bring their children for services? Or is everything pretty much done in the home?

Steven: In New Jersey, we do have some day centers where people come during the day. In New York, we do provide day services. But we don’t provide them at a center. We provide them one-to-one, community based activities that reflect the desires of the person being served.

Not everybody does well in a group setting, and some people do better individually. In that program our staff member will either go to the home or some other place, meet the person, they’ll spend the day doing various things…

Jeff: Today we’re speaking with Steven Vernikoff, the Executive Director for the Center for Family Support, on Special Needs Long Island, where we’re on every Sunday from 9:00 to 9:30 on 540 AM WLIE. We’re going to take a quick break now. We’ll get back with Steven, and learn more about the Center for Family Support.

[ad break begins]

[background music]

Male Announcer: Special Needs Long Island is a program brought to the community by Attorney, Ellen Victor and Special Care Planner, Jeff Silverman. It features individuals and organizations making a difference in the special needs world, and brings you the latest local and national news in the field of special needs.

If you are the parent or guardian of a child or adult with special needs, and need to plan for their future and well-being, Ellen and Jeff are available to speak with you as a listener of the show.

Whether you have questions about legal issues, such as special needs trusts, guardianship and wills, or financial issues including SSI, Medicaid, or Funding the Future. Ellen and Jeff are here to help you. They offer a no charge consultation to discuss your personal situation.

Please contact Jeff Silverman at 516-682-3363 or Ellen Victor at 516-223-4800 with any questions, or to schedule an appointment, or by email at [email protected] Thanks for tuning in every Sunday at 9:00 AM on WLIE 540 AM and wlie540am.com. Now back to today’s show.

[ad break ends]

Jeff: We’re back on Special Needs Long Island where we’ve been speaking with Steven Vernikoff the Executive Director for the Center for Family Support.

Steven, there’s one area that we’re very interested in. We would like to find out how your organization deals with that, and that’s the concept of self direction. Can you tell us a little about how self direction works?

Steven: Self directions allows the individual in the family to really craft their lives to be the way they want it to be. When you go to an established program, like a group home, like a day program that takes place in a facility, they’re structured programs with a certain amount of regimentation.

That doesn’t work for everybody. Some people want to have more and do things differently. With self direction they can craft their lives to be what works best for them. We act as what is called the physical intermediary for the person.

We train the staff that they hire. Then we pay the staff. We collect money from the State to pay the bills. We help them out in doing it because it requires a lot of effort on the part of the family to do so.

Ellen: So how does somebody decide? Do they come to you, and say to you, “Listen, we really don’t want to be involved with everything. We want to do things more on our own.” How would somebody get into that program?

Steven: That would be exactly one of the things that somebody could do. But not everybody knows right away what they want to get involved in. They may want to come and talk about what they envision for themselves or their loved ones.

Self direction may be an option. We may be able to do things which give them more freedom. The day program that I mentioned, which is completely individualized.

We have what’s called Supported Living Apartments, and Independent Apartments in which people can get less service. They live on their own, they get support when they need it. Things can be different for them than going to group home where they’re living with five or six other people.

Ellen: We talked a lot about group homes, but it’s really this range of services of living that’s supported by the State, and Medicaid. There doesn’t have to be this 24/7 living with somebody. Can you talk a little about some of your apartments.

Steven: We operate about 50 such apartments, where people live more independently. They’re very difficult to come by. We were talking about the housing crisis. Our people can only afford affordable housing.

In New York City at least, some of the affordable housing funding demands that they have a social service purpose. When somebody, a developer, is looking for us — and we’ve been fortunate to connect to Done Development, which when they do affordable housing, provides us with certain number of units for people to live independent.

When they opened they had 40 apartments for a lottery, for people needing affordable housing. 80,000 people applied for those homes. The problem is that a lot of people who can benefit from more independent living be happier, be more productive, but it’s very hard to find. Our partnership with the State helps us deal with that.

Ellen: That’s probably the complaint that we hear most, is that this housing issue, and it’s only going to get worse as our populations age.

Steven: It’s because the need also shifts in housing as people age, their needs become different. People with developmental disabilities age at a fast rate.

We’re already starting to wrestle with meeting the needs of people with more medical complications than we’ve had in the past, and ambulatory complications. We didn’t always think when somebody was 20 that they need to be in in a place that was wheelchair accessible.

Jeff: The self direction mostly come into play when someone’s a young adult or could that work with the children as well?

Steven: Self-direction is really for over the 21.

Jeff: Once the school service is…

[crosstalk]

Steven: It’s really geared around…where you live, how you live is very important about self direction. You can live independently even if you need 24/7, you could live on your own.

That person will be there, but you don’t have to live with other people. That matters a great deal to a lot of people. Or people need less supervised structures. So, self direction has been more for adults.

Jeff: When you mention the 24/7 if someone who’s living independently, is there someone actually that lives with them or is it someone that keeps stopping by to check in on them, how does that work?

Steven: It could work either way. Somebody could live with them and provide intermittent support. In many cases it’s shifts that come in. Somebody will come between 11:00 and 7:00 and stay with them. Somebody will come and get them out of the house in the morning, and somebody will come and be there until they get there, so it’s an intensive program.

Jeff: With there being such a demand for the housing in such limited units, as far as priority, how does someone get [inaudible 20:42] over someone else’s? Is it a waiting list kind of thing or based upon who has the most immediate need for something?

Steven: In terms of generally getting into a group home or what’s called a supportive living apartment, its need. Unfortunately, it’s rich families having the largest crisis.

Where you have suddenly this situation that happened recently with a colleague who was describing that they has to place somebody where suddenly the parent who was living, had Alzheimer’s and couldn’t care for the person anymore. In that situation, they’ll find a place for you.

Ellen: It’s good to know that at least. I deal with a lot of older families as well who’s disabled children have been living with them. They are old, they are in their 80’s and their children…and they say, “What’s going to happen?” They say, “Well, you get to a crisis and the State will help.”

Jeff: I think that’s a big issue, waiting too long to have someone gain some independence because the family feels, “Well, we could take care of them.” “Great, we know you could take care of them.”

But as Ellen said, an 80-year-old who has a 50-year-old child, it’s going to be very difficult, and that 50-year-old all of a sudden to have to have their own place one day.

Steven: The situation is going to be worse because as funding remains constant, as it has for the past number of years in both states, there’s no money to really develop new housing opportunities to the extent that they are needed.

The whole thrust of where services are going is to rely more on families for care, so that the opportunities to move out of the home are becoming harder and harder. They have this switch-away to really almost pushing families to care longer for their kids than they may want to be able to. It’s disturbing.

Ellen: It is a huge crisis probably all over the states, certainly in New York.

[crosstalk]

Jeff: I hear it from families I work with, even when they have young children, they’re eight-, nine-year-olds, and they’re concerned about the housing, I said, “There are other things to really worried about right now.” I get them…”Yes, at one point it’s going to be a concern but you’re OK right now.” But it’s just being embedded that it’s going to be a major problem.

We imagine things are going to have to work out somehow. We don’t know how they’re going to work out, so it’s great that organizations like yours are really there to help parents through a lot of the different life stages.

How would people find out more about the Center for Family Support?

Steven: The best way is to go to our website which is www.cfsny.org. They can see what kind of services and supports we provide. There will be a list of our various offices so they can call the one closest to their home if they want to contact somebody. Hopefully we’ll be able to help those people who need it

Jeff: That’s great. Thanks so much for what you and your organization does. We are winding down another Special Needs Long Island. This will be our last new show for the New Year. Thanks so much for tuning in.

Ellen: Happy Holidays to everyone.

Jeff: We will have some shows coming up over the next couple weeks and we’ll be back with our new shows at the start of the New Year. Thanks so much for Steven Vernikoff for joining us, the executive director of the Center for Family Support. Jeff Silverman and Ellen Victor, Special Needs Long Island. Have a great week we will speak to you soon.

Female announcer: You’ve been listening to Special Needs Long Island on 540 AM WLIE. Join us next week as we bring you more important information for the special needs community.

For questions, please contact Jeff Silverman, director of Special Needs planning for the Center for Wealth Preservation at 516-682-3363 or Ellen Victor, Esquire a special needs attorney at 516-223-4800 with any questions. Special Needs Long Island, every Sunday at 9:00 AM right here on 540 AM WLIE.

[music]

[ad break begins]

Male Announcer: Special Needs Long Island is a program brought to the community by attorney, Ellen Victor and special care planner, Jeff Silverman. It features individuals and organizations making a difference in the special needs world and brings you the latest local and national news in the field of special needs.

If you are the parent or guardian of a child or adult with special needs and need to plan for their future and well-being, Ellen and Jeff are available to speak with you as a listener of the show.

Whether you have questions about legal issues such as a special needs trusts, guardianship and will,s or all financial issues including SSI, Medicaid or funding the future, Ellen and Jeff are here to help you. They offer a no charge consultation to discuss your personal situation.

Please contact Jeff Silverman at 516-682-3363 or Ellen Victor at 516-223-4800 with any questions, or to schedule an appointment, or by email at [email protected] Thanks for tuning in every Sunday at 9:00 AM at WLIE 540 AM and wlie540am.com.

[ad break ends]

[music]

Female announcer: Join Jeff Silverman, director of special needs planning for the Center for Wealth Preservation and Ellen Victor, Esquire, a special needs attorney every Sunday morning at 9 AM for Special Needs Long Island. Tune in for the latest news affecting the special needs the community.

Hear from organizations dedicated to those with special needs and their families. Special Needs Long Island with Jeff Silverman and Ellen Victor, every Sunday morning at 9 AM right here on 540 AM WLIE.

[music]