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Expert Legal Advice On Caring For A Child With Special Needs

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Arlene Lakin, Caring For A Child With Special Needs

With Arlene Lakin, a Florida-based Elder Law and Special Needs Attorney

Sometimes life throws you curveballs.  And when it does, it’s important to not be blindsided.  Steve’s next guest, Arlene Lakin, has personally experienced two challenging incidents in her life, which prompted her to take action to help others.  Arlene is an Elder Law and Special Needs Attorney, practicing in Pompano Beach, Florida.

Facing Her Personal Challenges

Arlene gave birth to her third child in 1984.  The baby was extremely ill, needed multiple surgeries, and stayed in the intensive care unit for three months.  When they brought him home, Arlene thought he would heal and all would be well.  But, unfortunately, the child grew up with cognitive and physical difficulties.

With two other young children at home, Arlene and her husband made the difficult decision of placing their youngest in a care facility.  Her special needs son is now 34-years-old and lives at the Ann Storck Center in Fort Lauderdale.

Florida’s Voice

Dealing with her son’s problems was very challenging.  After placing her three-year-old in a care facility, Arlene went on to study law.  She says her son motivated her, and the whole experience prompted her to form Florida’s Voice, a non-profit focused on advocacy for people with developmental disabilities.

Her Advice On Handling Children With Disabilities

No one is really prepared for adverse life events.  If your child has developmental issues, first make sure you seek proper medical care and advice.  After that, focus on pragmatic aspects such as long-term care and financial needs and estate planning, tied to the nature and degree of your child’s disability.

Steve adds that things get more complicated after the parents of a disabled child die because there must be a guardian in place who’s willing to take on this enormous responsibility.

Special Needs Trusts

Arlene counsels parents to think long-term about successor trustees who likely will be alive when your special needs child ages.  She recommends adding a more permanent institution, such as a trust company or a bank, to the list of trustees.

Special Needs Trusts typically kick in after both parents die.  Unfortunately, most banks do not want to handle special needs trusts or require at least $1 million in that trust before they’ll even consider becoming a trustee.  Some banks will handle smaller trusts for a fee but still expect a minimum of $300,000 in the trust.  While that may seem like a lot to the family, from the bank’s point of view, it’s barely enough to cover their liability exposure.

Pool Trusts

In response, some companies handle special needs trust administration where they pool trusts set up by different families.  Arlene worries that such pool trusts are too new and may not have the financial staying power that larger banks have.

Becoming The Guardian

When individuals with special needs turn 18, they are deemed adults by law.  Then, even parents need to go to court to become legal guardians of their adult children.

Guardianship issues become a problem when there are no willing and able siblings to care for the special needs person after parents die.  Therefore, Arlene re-stresses the importance of planning ahead and factoring in worst-case scenarios.

Finding The Right Care Facility

Finding the right care institution isn’t easy, and a lot depends on the functioning level of a special needs child.  Moreover, parents are often unwilling to place children in care facilities, yet Arlene encourages them to do so to get a flavor of what the facility is like.

The bottom line is that financially caring for a child with special needs is rather complex.  To learn more, go to StevePomeranz.com or visit Florida’s Voice for advice and ideas.


Disclosure: The opinions expressed are those of the interviewee and not necessarily United Capital.  Interviewee is not a representative of United Capital. Investing involves risk and investors should carefully consider their own investment objectives and never rely on any single chart, graph or marketing piece to make decisions.  Content provided is intended for informational purposes only, is not a recommendation to buy or sell any securities, and should not be considered tax, legal, investment advice. Please contact your tax, legal, financial professional with questions about your specific needs and circumstances.  The information contained herein was obtained from sources believed to be reliable, however their accuracy and completeness cannot be guaranteed. All data are driven from publicly available information and has not been independently verified by United Capital.

Read The Entire Transcript Here

Steve Pomeranz: Sometimes life throws you curveballs, and when it does, it’s important to have an understanding of all the factors that are contributing. There is one curveball that many families face which they’re sorely unprepared for. My next guest has personally experienced two challenging incidents in her life and has taken action to help others. She is Arlene Lakin, Elder Law and Special Needs Attorney, and she’s practicing in Pompano, Florida. Welcome to the show, Arlene.

Arlene Larkin: Thank you so much, Steve, thank you.

Steve Pomeranz: So in 1984, you yourself had a challenge that you dealt with and it took you to your current place in life. Now tell us a little bit about that.

Arlene Larkin: Okay, well, I gave birth in 1984 to my third child. My first two children were typical children. They were fine and there were no issues with them. But the third baby was extremely ill and had multiple surgeries as a newborn, as a neonate. And for three months, he was in intensive care and when we brought him home—and we thought he was just going to heal and be okay—but ultimately, it turned out that he was not okay. Cognitively as well as physically and now he’s 33 years old and he’s living at the Ann Storck Center, Fort Lauderdale. So when he was about three years old, we placed him in a facility in Miami.

And that was very a challenging and hard thing to do, but he was extremely difficult to manage medically. And I had two other children as well. So it was a decision we reached, my husband and I, and we just proceeded. And after that, I went to law school. He motivated me, actually. My son motivated me.

The whole experience motivated me to want to do something different with my life. Prior to that, I’d been a professor of foreign languages and I decided to go a whole different way and become a bigger advocate. So I went to Nova Law. And then finished it to the bar exam, passed it, thank God, and then I became a practicing attorney and a few years after that, maybe three years later, I got together with a few other families in similar situations and formed a non-profit called Florida’s Voice on Developmental Disabilities. So it’s a statewide organization, all volunteer.

We take no government funding whatsoever, and we just finished our statewide conference in Boca Raton last week actually. And I’m very pleased with what we’ve been able to do, helping families throughout Florida. And actually, if they live out of state and they have an issue, they can contact me as well. It doesn’t matter where you’re from, but we just try to help one another.

Steve Pomeranz: Wonderful. So no one is really prepared for this kind of life event, and what are some of the first things that you would recommend someone do if they find themselves in this situation?

Arlene Larkin: Well, the first thing that all families do. In my situation, we knew at birth that there was a problem. We had no prior knowledge. Everything was normal in terms of my pregnancy, and all the prenatal tests came back normal.

So surprise, things were very different, and in the beginning, it depends on when you discover the situation is what it is. The first thing parents need to know is what to do medically, and that’s not my area of expertise. And everyone’s case is different, but that’s obviously the first thing is the medical piece.

Steve Pomeranz: Sure.

Arlene Larkin: And once you get that sort of under control, then you need to think about when you get to the next level. It’s kind of the more pragmatic thing such as estate planning and what you are going to do. And sometimes you know right away that this is going to be a lifetime problem. And sometimes you don’t know. Every family is different and every disability is different. And the degree of the disability varies.

So at some point down the road of life and the journey you may be on, you’ll find out that it’s time to start making some escape plans, and they may affect your child and what you’re going to do regarding that particular child who’s disabled.

Some people have to see attorneys like me. We do special needs trust planning and that’s where we go with that so that the child of any age does not inherit any money directly because either they can’t handle the money or they’re going on public benefits or are currently on public benefits, and we don’t want them to inherit money inadvertently from their family.

Steve Pomeranz: But it gets more and more complicated than that as well because now you have to assign, after your passing, there has to be someone there that’s a guardian and that can be very complicated in some families. Some families don’t really want people to take on the responsibility or they just they can’t agree on the person to take care of things. So you must handle these special needs trusts from the very simple to the very complex. Give us kind of an idea what the more complex ones might look like.

Arlene Larkin: Well, part of the problem is when you do a special needs trust, normally the parents or the trustees—if it’s one of these that goes into effect immediately—most of the time, the parents set these trusts to kick in upon their death.

Steve Pomeranz: Yeah.

Arlene Larkin: And then we have a problem because most of the large banks that handle trust administration, they don’t want to handle special needs trusts. And they usually are requiring a minimum of a million dollars in that special needs trust before they’ll even consider being a trustee of it.

The families normally come to me when we talk about doing a special needs trust, and I start discussing, well, who are the successor trustees when you’re deceased or not able to function? And they start listing relatives and I said that’s a good and fine, but you’ve got a five-year-old child with Down’s Syndrome, what if that child was to be 85? How can we guarantee these people will outlive your child, and we can’t. So I said, at least, put down the trust company or a bank with the trust department as a default because most families simply want to keep a family member as the trustee, and I said that’s good and fine, but let’s add somebody else.

You brought up a good point, Steve, though. When an individual turns 18 in the state of Florida, they are considered an adult. And if your child needs a guardian, then you have to go into court even though you’re the parent. You’re not the natural guardian any longer legally. You now have to go into court to become the real legal guardian of your 18-year-old adult child, which I did when my child turned 18.

And then you need to think about who succeeds you when you can no longer serve. That’s a problem for a lot of families because they may not have other children or other children that are competent or that they want to charge. And they may not have even siblings, I have some people whose families are really small. And so we have to discuss who the successor guardians will be. When they’re appointed the guardian, we need to think about that, you have to really plan for worst case scenarios. And it’s never too early to start planning.

Steve Pomeranz: You were faced with a difficult decision to have to put your child in a separate institution, which is really heartbreaking. I can imagine going through that is very difficult to do. How does a person go about finding the right institution? I was involved with the rehabilitation center of Boca Raton for many years, and that was really about special needs people.

And we gave them opportunities for work and the like, but it was a very complicated process, and families were still involved, and so I got to see some of the ramifications of all of this. So again, this problem with the bank. The family does have a million dollars, but let’s say they have more than one special needs child and the minimum is a million dollars. What are they going to do with their money?

Arlene Larkin: That’s going to be a problem and there is no way around. I found a few places and institutions that will handle a smaller trust, but they’re not going to go too small. And they have a minimum fee, certain banks will if it’s small. Let’s say it’s 300,000, you may not think that’s small, and the family normally thinks that’s a lot of money. But to the banks, they feel that the liability exposure is too great and it’s very challenging then. I have tried to find somebody who has done some of the pool trust companies that handle what is called pool trusts are now starting to do what we call third-party special needs trust administration, the third party being the parents.

When it is there money and they are setting up a trust to their child’s benefit. Some of them will take smaller special needs trust for administration, but that’s a whole new thing that’s developing and I’m not 100% certain that these companies will survive in time. It’s not like a major bank, which cannot be guaranteed to survive, but more likely would. And some small trust company that just popped up recently and now they’re saying, they’re doing special needs trust administration. That kind of worries me a little bit.

Steve Pomeranz: Yeah.

Arlene Larkin: But you mentioned housing at the HabCenter. The HabCenter in West Boca, I’m familiar with it. I did a program there years ago. They’re strictly like rehab. They do not have a residential component to my knowledge.

Steve Pomeranz: Right.

Arlene Larkin: But the decision residentially is another important thing for families. If their child stays with them, some people’s child can be as profound as my son. Their parents still want them with them.

Steve Pomeranz: Mm-hm.

Arlene Larkin: Sometimes the child is very high functioning, and they have a tremendous range. But at some point in the future, the parents have got to think about where their child is ultimately going to live when they’re not around anymore, and that’s very hard for people to do. A lot of my families are coming to do a guardianship if their child’s turning 18 or maybe their child’s 20 or 27 and now they’re coming to do a guardianship.

I broach the subject because I feel the need to counsel them on it but some of them just don’t want to do it, they’re just not emotionally ready. And I try to encourage them and tell them if you place your child now, the child’s 25, 27, you can at least see and be sure that the place is good and you like it and you have had an opportunity to-

Steve Pomeranz: Experience it.

Arlene Larkin: To see everything that is going on and if it is not good, you move your child, otherwise it’s an emergency circumstance which is certainly not good for your child. Sometimes it works and sometimes it doesn’t.

Steve Pomeranz: Very complicated. Unfortunately, we really can’t get through all of the facets today, we are out of time. My guest is Arlene Lakin and, Arlene, is there a website that people can go to to find you?

Arlene Larkin: Well, for me it’s very easy, it’s just www.arlenelakin.com.

Steve Pomeranz: L- A- K- I- N, right?

Arlene Larkin: Yup, easy to find me. Yup, that’s it. Thank you so much, it’s a pleasure.

Steve Pomeranz: Yeah, thank you very much for spending your time with us, take care.

Arlene Larkin: You’re welcome, take care, bye.

Steve Pomeranz: To hear this interview again and to find out more about Arlene Lakin, to find her links and the like, go to stevepomeranz.com and we will have a transcript of this and a summary of it. And we will also have the audio if you like to listen to that. Again, that’s stevepomeranz.com.