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Special Needs Spotlight Series: Taking Control – Harnessing Anxiety & Turning It Into a Plan

Special Needs Spotlight Series: Taking Control - Harnessing Anxiety & Turning It Into a Plan

The law firm Norris McLaughlin, P.A., is pleased to present the Special Needs Spotlight Webinar Series. In this introductory session, “Taking Control – Harnessing Anxiety and Turning it Into a Plan,” Shana Siegel, a Member of the firm and Chair of its Elder Care & Special Needs Law Practice Group, spoke with Trish Colucci Barbosa, RN and Care Manager at Peace Aging Care Experts, LLC, and Elizabeth McKenna, CFP and Chartered Special Needs Consultant at Merrill Lynch Wealth Management.

Watch the recording here or read it here:

Shana: As you know, as parents of individuals with special needs you have a lot of things on your plates, so we’re going to get this started and hopefully we’ll be able to address a lot of the questions and issues you’ve been dealing with on a day-to-day basis. My name is Shana Siegel, and I am the chair of the Elder Law and Special Needs Group, here at Norris McLaughlin. Thank you for joining us. Today, I have along with me, Trish Colucci, who is a nurse and a care manager, and Elizabeth McKenna, who is a Certified Financial Planner and a Chartered Special Needs Consultant. And I wanted to bring together Beth and Trish and myself; the three of us have worked together to assist a number of clients and families and I greatly respect the expertise of these ladies. So, when I was thinking about putting together a program, they immediately came to mind. Coincidentally, you’ll hear about both Trish and Beth’s sons with Down Syndrome and they are both named Michael. So, hopefully, that won’t be too confusing for you. The three of us have been planning a seminar series for some time to address special-needs topics, but then the virus hit. This makes the need to address certain things like estate planning all the more urgent. It also pushes to the forefront other concerns, such as putting into place contingency care plans. We’ve all read the Chilean reports about parents passing quickly and unexpectedly of COVID and leaving children with disabilities behind them. In much smaller ways, each of the three of us who have experienced additional challenges as a result of this virus and its impact on our own special-needs children. So, today we wanted to talk a little bit about that, some of these topics, share our experiences, and introduce some of the issues that will discuss throughout our webinar series. So first, I wanted to hand the floor over to Trish. Trish, could you tell us a little bit about when your son Michael became ill and the lessons you learned as a result.

Trish: So, my son Michael, we call him Mikey, is 24, almost 25 years old and he has down syndrome as Shana said. He’s not particularly high functioning and there are some behavioral components, but other than that he’s just adorable. And a few weeks ago, after COVID kind of was in our area, we were all kind of waiting for the ax to fall, out of nowhere Mikey started to run a low-grade temperature, and with the nursing background that I have, I immediately jumped into clinical mode wanting to isolate the disease but keep Mikey as happy as I possibly could, which really was a challenge. The main we did first of all was we established his room as where he was going to spend his time until the fever was over or he developed any other symptoms. In our case, you know, in Mikey’s case it takes for people to hold him down to get a vial of blood, so the idea of taking him to a drive-through testing center by myself and having somebody stick a swab up his nose, it just wasn’t going to happen. So, we just presumed he had it and then we decided we would wait to see what happened. So, Mikey’s room we have a gate anyway that keeps him from walking around the house at night; he’s had it his whole life, so we put Mikey and his room and we shut the gate and that was how we kept him in there, although a couple of times he did drag a chair from his desk over to the gate and tried to escape. One time he was successful. But with the idea of keeping him in his room, we wanted to keep the virus kind of—again, presuming that he had it—keep it in one place and keep him from wandering around the house and possibly infecting and touching things that we all touched. It was important for him to have some way to entertain himself, which is difficult when you’re thinking about all day and all night, but he has a TV in his room, he had some videos there, he has an iPad. Not for Mikey, but for other children you may consider putting coloring books for whatever is going to keep them occupied. And if they’re gamers, you could put their Xbox in the room. I mean, really anything just to keep them going. In our case, music is terrific. He loves Elvis Presley, so we played a lot of that. On the precaution side, I set up a little table outside his room and it had gloves, it had a mask, and I got some—I bought some Johnny Coates hospital gowns from a local medical supply, but you can use even like a man’s dress shirt that has buttons you can close, and the idea is that if the child is sick and he sneezes on you, it’s not going to get it on your clothes and when you leave the room you take them off and put them in a hamper, which I also had outside his room. We used all plastic silverware paper plates, so they can just be thrown away in the trash that I also had outside his room, so we had a nice little isolation part of sorts set up out there. And then, with Mikey, because he has behavioral, he always doesn’t do what you want to do and I was afraid that if we let him out of his room to use the bathroom we would have a lot of trouble getting him back and we would have to physically put hands on him to guide him back to his room and kind of pushed the issue, and that was not desirable this whole isolation. So I did something a little innovative in addition to the hospital gowns that I bought, I also got a commode I put something down on the floor that protected the floor, and so I kind of joked around is sort of like a little jail cell complete with toil, but you know he really didn’t seem to mind in the toilet didn’t bother him, being by himself in his room all that time bothered him. We washed hands excessively, he didn’t allow me to take his temperature, I had the kind that I could just lean on his forehead for a minute, not even a minute, about 10 seconds or less and I was able to log his temperature. He really didn’t develop any other symptoms, but I was ready if he did, I was going to call his doctor and then if he developed any serious issues, such as shortness of breath or high fevers that I couldn’t bring down, you know that is the time to talk to the doctor or just take your child to the emergency room. But you know, I recognize that special needs is a big world everybody has different needs. This was kind of the most extreme you know, the most extreme that I could go where we felt comfortable. Mikey was sick for—well, he had a low-grade fever—he really didn’t develop any other symptoms. He ate and he drank and he slept and everything was fine. There were really hot times of the day where he was not happy being in this room and we just did our best to get through it. So, that’s how I kind of handle that, Shana.

Shana: So, Mikey didn’t end up being hospitalized, but can you talk a little bit about what precautions and how you might advocate for him because I know there’s a lot of concern that parents have had the individuals are allowed to be in the hospital. Can you address that issue a little and actually, Trish, can you—I forgot just one housekeeping thing—we do have everybody muted. If you do want to ask a question you should do so in the chatbox and we’ll address questions at the end. Go ahead, Trish.

Trish: Okay. Well, I’m happy to say will that was something really on my mind because I could not imagine turning Michael over at the doorway of an emergency room and walking away. It just was inconceivable to me. But on April 25, the New Jersey State Department of Health came out to address the issue and they said that New Jersey coronavirus patients with developmental disabilities must be allowed to have a support person at their side during a hospital stay. They wanted held at one. If you could make a good case for why two is absolutely necessary than that let to win, but the hospitals—the hospitals maintain the right if they don’t have enough PPE because, I’ll get to what the person has to wear—if they don’t have enough PPE for two people than you can only have one and, what they really reserve the right for was if they didn’t even have enough extra PPE for one person they could deny you. I don’t think that that would happen, but health Commissioner, the woman to my right who needs no introduction, Judy Persichilli, for those of you who watch the governor’s addresses, she said that the hospital should take into account the patient care and well-being. And that having a support person is essential for patient care for these folks, especially where the disability could be due to an altered mental status, a developmental disability, intellectual or cognitive deficits, communication barriers, or even behavioral concerns. So that one rings true to me that I was really concerned about Mikey’s behavior. The visitor, the person—the support person can be a family member or personal-care provider or service provider who could be at the bedside. That person has to be symptom-free, has to agree to be regularly screened by the hospital staff, must have their temperature checked, must wear PPE at all times, and is not allowed to come and go from the hospital. So, if you’re the mom or the dad taking your child to the ER, you’re in, you don’t get to leave, you stay until the discharge. Anyway, they also have extremely limited access to other parts of the hospital, which was not specific but I read that to be that if your child needs to go for an x-ray, for instance, you may not be able to go with them. I mean, you will, but you would have extremely limited access to other parts of the hospital. Obviously, that’s for—you know—the safety of everyone. So, my recommendation is if—you know—if you have an adult or a child with a disability, and this could happen, I suggest that you do two things: I suggest that you what I call the go-bag. Something that one prepared for the child which might have, in addition to clothing or pajamas or things, maybe their iPad, their headphone for a list of things to throw-in at the last minute for using them at home. A communication device. Behavioral awards: Mikey is very motivated by food rewards, so I would want to pack snacks that I feel like I could get him to behave himself. Maybe some small toys or special toiletries. But I also recommend that whoever that support person is going to be to also pack their go-bag, so it’s ready. And in that you should have a copy of the guardianship letter if you are the guardian to prove that you have the decision-making rate on medical care, your own personal ID to prove that it’s you, your child’s identification, a list of your child’s medication and dosing times, and I also recommend that you bring the labeled prescription bottles with you because sometimes hospitals don’t have ready access to medications. And I know in my son’s case, he takes behavioral medication throughout the day, and if we wait even a couple of hours, we could be looking at an entirely different child. So, this way, if you have the prescription bottles that are labeled and with the dosing times often times the hospital will say, “will I have to give you yours,” and then when we get ours—you know—we’ll put them on our schedule. So that can be really key. A list of doctors, your child’s allergies, any pertinent medical records that you might have handy that would be good for the doctors to see. Your phone charger because you’re going to want to stay in touch with the outside world, and a change of clothes, any medications you take you should have prepared in a bag as well. And that—Shana, this all is assuming that the child is either under the age of 18 or over the age of 18 and actually has a guardian. But what would happen in that case if there was no guardian?

Shana: Well, that’s a very difficult situation and that’s why we always advise families to go for guardianship right away. I know we’ve all seen too many situations where families do wait and then you have a crisis. And, you know guardianship is not something that can be done in five minutes. There are emergency guardianship or temporary guardianship proceedings that can be undertaken, and in fact, I have worked with families who were facing this with COVID, where they haven’t hadn’t had a guardianship in place. But, you know, we do obviously recommend that you do it at the time you’re your child does turn eighteen, so you do have the appropriate decision-making power. You know, at the beginning of the virus, getting a guardianship was literally impossible. There was no mechanism in place in the courts to deal with these situations and the Bar has been able to address that through advocacy, and now court-appointed attorneys can see the alleged incapacitated person via Zoom, via conference call, the medical records, the 30-day immediacy requirements are being waived or altered, so there has been a lot of accommodation that we have been able to get as a result of advocacy around COVID.

But, you know, I’m not going to go into all the details of seeking guardianship and the process. We’re actually going to have a second webinar that’s going to deal very extensively with that. But I did just want to address a couple of points. First of all, as I already mentioned, it does take several months, so it is important to start early if at all possible. I find that it is usually a three to four-month process and of course with COVID everything is happening slower. I would certainly urge you to think about a limited guardianship if that’s possible. The law requires that the is able to retain as much independence as possible, so you should really have a discussion with the family and with your attorney as to what that means, and what would be appropriate for your child to be able to continue to handle independently. I always have a discussion with my clients regarding considering co-guardianship. So, if you are a single-parent or even where there are two parents having another individual as a co-guardian can be really important and we see why with situations like COVID if we have one or two parents who passed quickly we don’t have a mechanism for having somebody else to come in and act right away. So often my clients as they age, they will add another co-guardian. We don’t have in New Jersey anything like some states have where you have a standby guardian. You can certainly nominate someone in your documents, and I always urge my documents to do so, so that the court has some direction as to whom you would want to be appointed. But a court hearing is going to be required to have whoever that person is put into place unless they’re already acting as co-guardian. So, something really to think about in terms of that transition, making the transition as easy as possible. I also would urge people to think about the interplay between guardianship and trusteeship. So, a lot of times the trust, a special needs trust is where all the funds are held. And yet, there may be one person who is handling that or one organization is handling that and someone else who is acting as guardian. And so, the guardian can’t necessarily do the things that they need to do if they don’t have access to money. So those are all things that you really kind of got a think about ahead of time in doing your planning. I often get asked when a guardianship is necessary for a higher functioning adult. You know that is really an individual specific thing to consider. Whether it would be more appropriate given your child’s strengths and weaknesses for guardianship or can they sign their own legal documents. If they can sign their legal documents, you would really want them to sign a healthcare proxy and a power of attorney. And regardless of what your child’s level of functioning is, it’s important to consider treatment and end-of-life decisions now, not wait until you’re in a crisis situation, and address these issues through the guardianship, through the documents, but also through a letter of intent in the life care plan. So, Beth, can you give us an overview little bit of an overview of the letter of intent and life care plan—once you on unmute yourself. There you are.

Beth: Thanks, Shana. Good afternoon everyone. I’d be happy to go through the letter of intent and the life plan because every parent’s concern is who will care for my child after I am gone. And two key components of that in my view are the letter of intent in the life plan. So, the letter of intent is a comprehensive document about the special needs individuals which can contain a number of important information, such as information about the mother, the father, the siblings. Information about the special needs individual, including specifics like height, weight, blood type, clothing and shoe size, date of birth, faith, where born, where raised, information about the representative payees for the special needs individual, powers of attorney, trustees and their contact information, medical history, charts with medication names, time taken and dosages, including over-the-counter vitamins and over-the-counter medication, functioning level including IQ, vision, hearing and speech, mobility issues, if any, also insurance information—very important—physicians, dentists, contact info, behavioral issues of modification plans, birth-control used, diet, housing, current and future possibilities, types of activities preferred, and financial preparations made. In other words, the letter of intent should be as complete as possible a snapshot of your child’s life right now, plus your hopes for the future. So, the idea is if something to you, the irreplaceable parent caregiver, that someone will be able to read the letter of intent and hopefully have a very clear picture of how to care for your child. I recommend that the letter of intent and the life plan be kept with your other important papers, such as you will, your special needs trust, your powers of attorney and that key people know of its existence and are familiar with it.

So, the life plan is simpler but it’s still very important. It speaks to your hopes and dreams for your child. What life might look like in the future? And it also speaks to the person-centered planning process, which unlike the letter of intent, is more on the positive aspects of the person’s life. Also, I highly recommend this special-needs individual be involved as much as possible in the process so that his or her wishes are at the forefront. Also, have family members and friends participate as well. My outline for the life plan includes topics as housing. It actually asked the question, if you went into a nursing home or died, where you want your child to live. Education, employment, activities that your child enjoys, religion, it does touch on behavior, but it really touches on what works. In the past, and at everything you have set up right now, medical area and then, who would want to take care of your child’s, so an advocate or a guardian, and who would you want to take care of your child’s money, including your trustees. And then, any other areas of concern. So, these are two very important documents. They are not legal documents but they should reside with your legal papers, I believe.

Shana: Great. Thanks, Beth. I know we’re going to be talking about that in future webinars. Beth, you on during this all pandemic, where you had to try and get more support for Michael from the school system. Can you talk a little bit about how you were able to do that?

Beth: So, it gets really back to the basic idea of always advocating for your child and for yourself for that matter. So, my son, Michael—and he goes by Michael or Mike—is 18, he has Down Syndrome and ADHD. So, he’s partially included in our local high school, and he’s actually in his senior year. So, he is graduating this year for the academic program, and unfortunately, we are not going to have a graduation ceremony this year but hopefully the other things that they let him know that this is a special time for him, as well as his classmates. So that, of course, he will have two more years in the transition program. So, for the first few weeks of lockdown, I would say he was totally disengaged from school. Michael didn’t understand what was going, he often refused to come in for classes, he would be playing outside. Once they finally started online that is, and he generally kind of walked around the lost look on his face. And what made things particularly bad in our school district was, for the first two weeks, Michael’s school wasn’t even online. They would just send a bunch of assignments home. Toward the end of the second week, I wrote an email to the Transition Coordinator and I copied both the Director of Special Services and the Superintendent of Schools asking when they would be online, as other school districts I was hearing were already doing. Now, I’m not saying that that did anything, but I’m saying that I think that they already had it in place. What I’m saying is the more people reach out and—you know—make their wishes heard, the better off all of our kids are.

So, even after they started online in the third week though, he really didn’t understand what was going on. Again, he refused to come inside for classes often and at that point, they only had to live classes a day, maybe half an hour each at best and he was working with one paraprofessional about half an hour a day.

So, I happen to be pretty much always one who speaks my mind on these types of issues, so again I wrote an email, but I didn’t just write to the teacher, I copied the transition coordinator and the director of special services. I said that what was being offered online wasn’t adequate for Michael’s needs. And that they needed to provide more help via online access. So, what they did was they gave me an additional paraprofessional for Michael. That additional half-hour actually worked wonders to get him more engaged, plus more classes started being online. I think the teachers realized that two synchronous classes a day weren’t enough. And even if they’re on for just of a short period of time, so now even though it’s not ideal—I wouldn’t call it ideal—it’s about as good as the situation can be. So, regarding the email and my decision to loop in the director, I just find that an amazing amount of things get done once I get everyone in the loop and it saves a lot of time. And also, I’m not really worried about what they think about me personally, what I want is the best for my child and for—you know—the family in general. So, I’m always willing to reach out, and I think I really advocate for and I encourage other parents to do the same. I think it’s the best thing for our kids.

Shana: Now, Michael is under 21, but you are able to get behavioral supports through DDD, is that correct.

Yeah. That’s right, actually. So, pre-18, we were able to get a certain amount of services like camps, which are normally in the summer, but unfortunately, more and more of them are closing down. I just found out about two more that he has attended in the past that are unfortunately closed down for the summer. And I’m really not going to be surprised at the end of the day, they pretty much all shut down, which is most unfortunate, but understandable considering the circumstances. So, Michael actually could be eligible for Medicaid if I wasn’t claiming him on my taxes, and he is actually considered a non-disabled adult child. Meaning, that he became eligible for the Social Security family benefit prior to the age of 18 when his father retired and began collecting Social Security. So, that made him ineligible for SSI. So, I then applied on his behalf to convert his family benefit to Social Security disability after he turned 18. So, that puts his status regarding being medicated a bit in limbo at present, but it doesn’t really matter because he’s covered under my benefits and would be eligible for Medicare within two years anyway. He’s still in school, so he receives benefits there. And then he will be eligible for other services to DDD after 21. But we did receive some respite benefits for Michael through the children’s system of care administered by Perform Care prior to the age of 18, as well as payment for that one week of sleep away camp. The respite benefits it consisted of funding of up to 20 hours a month for respite worker hired by me. And it’s important to apply for these and other available benefits through Perform Care, and to receive what’s known as the cyber ID for your child. So, post 18—getting to your point, Shana—the benefits are slightly more robust, so for his behavior issues, I was able to get him behavior modification counseling, four hours a week free through children’s system of care. So, because he’s not eligible for Medicaid currently, they have a special Medicaid number which they use for this purpose. They also have family services available through the family support organizations. And these provide help for families dealing with children with behavioral or mental health challenges. FSO also has the youth partnership cure advocacy program. We have yet partaken of that because of the COVID, but I hear that they are doing Zoom sessions, which could be interesting. So, we are definitely going to try this when things get a little bit more back to normal, I’m going to try to get him involved in those programs.

Shana: That’s great. You covered a lot of ground and a lot of the topics that you have strong in terms of the different services and the different public benefits programs, I know a lot of parents really struggle with, and we’re going to be devoting future sessions to really dive in deep into those sections.

Trish, your son is over 21, so can you tell us a little bit about your thoughts about getting additional services or funding during this difficult time?

Trish: Sure. So, Mikey is now—you know, back to DDD, and he gets a state budget based on what his needs may be—been assessed. I’m just going to speak topically assuming that most folks kind of understand there is a process once somebody turns—once somebody goes back to DDD. So, in short, you’re assigned—you chose a support coordinator who helps to spend your budget on the child’s care. So, in Mikey’s case prior to COVID, we used most of his budget to pay for his day program and we used the other part of his budget to pay a caregiver, who’s been his babysitter basically for most of his life. So, she became—she’s working through a fiduciary agency, and she is being paid by Mikey’s budget money to care for him before his program after his program every day. So, once COVID came into the picture all of that ended. You know, we couldn’t even—we didn’t even feel comfortable, you know having him go to a sitter’s house because we are worried about exposing her, we were worried about her exposing Mikey. So, so basically, we shut down. In my particular situation, Mikey’s dad and I are divorced and we share custody 50/50. So, he’s half the time with me, half the time with his dad, and we alternate weeks. So basically, Mikey moved in and we’ve just been—you know—changing, kind of volleying every week and he stays with his dad were with me. And I called his support coordinator recently to say—you know—I know you’re not paying the day program, is there a way we can be paid to be his caregivers—you know—we don’t want to use that money for anybody coming into our home, as much as we would love to have somebody for Mikey to play with because we’re both running businesses, I don’t feel comfortable having somebody come into my home, and it turns out, yes, you can do that—that, like our babysitter, Mikey’s dad and I can be paid through his budget to be his caregivers and then we can use that money on his care or—you know—or in my case, I’ll probably be putting it in an enable account for him. But at any rate, there’s money there. I know that there are parents out there who have children with special needs who are out of work right now and have no income, so this can be a nice—you know—it’s not a huge income stream, but it’s something that can maybe help keep you afloat.

Also, there’s always been the Personal Preference Program through the Medicaid HMOs, and that’s another way that families can be paid to be the caregiver of their child, and if you would like more information about that, I refer you to your support coordinator, who can help you put down the right channels to get funding for that. So, those are two funding sources right there, where parents who are doing the heavy lifting themselves now full-time can get some compensation, which is kind of nice. Also, you can—some of the services are available other than what we were using for Michael. I have also transitioned to the virtual format. You know, physical therapy and occupational therapy, not so much, but cognitive therapy, behavioral therapy, speech therapy, there are some providers who are doing that through Zoom or some other virtual media. Some of the community inclusion services like the, like, I called them—the kind of like afterschool groups—in Mikey’s case, we call his program, work. So, after work— you know—maybe they go bowling or they go on little trips or they have different hour activities that they do. Some of those have changed over virtual format and have become sort of a social outlet, were—you know—if it were Mikey’s bag, which it’s not, I can set him up in a situation, so it’s like this, where he can meet new people and stay connected with his friends from those programs.

There are some career planning and vocational counseling that can be done virtually, depending on the provider. Some equipment and supplies that you can get through that DDD budget. Right now, there’s—I’m told there’s a huge push, everybody wants iPads obviously. You know, everybody’s connecting virtually, so DDD has to approve that, and right now I was advised by my own support coordinator there’s a backlog. I guess it’s kind of a bottleneck because a lot of people want them in there trying to weigh the value of the cost of it, to how long this might go on, and is it worth it to spend that kind of money right now. So, they are entertaining requests and you can work for your support coordinator to make a request for that. You know, always advocating for your child as I said, it never ends—right. It starts from when they are born and it ends when they die or we die. So, no matter where they are, we have to make sure that, as parents, our children’s voices are heard, that their needs are met.

Shana: Absolutely, but I know that DDD has a lot of flexibility now with the program rules and that—you know—it’s really a matter, as you said of, being an advocate, pushing your coordination agencies. I know that, for I am the guardian for the young man with developmental disabilities and no one came to us offering services, but when I made a number of calls to his support coordination agency, we are able to get some online services. So, you know, I think it’s just a matter of continuing to make that push. Now, DDD can also provide emergency services if, God forbid, you or your caregiver did become ill, and you did need to provide for the care of your child but, and I think it’s important to discuss that we use work ordination agency, discuss it with the other important people in your lives. But I think most people would prefer to have an individual plan, a private plan was someone their family member knows. So, for those of us who do have the luxury of having somebody else who can step in—you know—what kind of service, Trish, might be might for that person?

Trish: Well, I think it’s—you know—it’s key to know who you want that person to be. Parents need a second-in-command in case they do get sick. You know, in my case, as I said, my husband, my son’s father shares custody, we also share guardianships, so he would be the natural one, but what if we’re both sick. It could be maybe a step-parent, it could be a family member, an aunt, an uncle, a sibling. But the issue is, even though my son has two wonderful sisters, neither one of them is in New Jersey right now. So, we would have to figure out how we would get them together. Would Mikey go to one of them or would they come back to New Jersey to be with him? Same if you have another relative or family friend, you have to have an idea in place of how you’re going to get them together. It’s one thing to choose the person, but there’s got to be a plan so that the person’s available. Getting back to the go bag that I talked about earlier, it’s super important for this person, and what’s in the go bag for the support person has a little bit more information—you know—a lot more of what Beth was talking about—you know—the medical care, the child’s preferences. I love the idea of the shoe sizes—you know—what size clothes they wear, and all of those ins and out that, as parents, we don’t even think about. In fact, as I listened to Beth list them off, I thought, oh my gosh, I didn’t think of that. And then she said something else, and I was like, yeah, that too. So, there’s a lot to know. You know, we’re so used to dealing with it because we dealt with it all of our lives, it’s hard to imagine somebody else stepping in and saying like, okay, like, what time does he have breakfast, what are his favorite foods, and that sort of thing. So, that’s really important for that person to have. And also, the other providers in their lives, the providers of services, therapists, all of that kind of thing. And if there’s no family member or a family friend who is able to do that and you really don’t have anyone, you can always reach out to a home care agency. I would tend to choose one maybe that’s—that smaller one, like a mom and pop, where you can really kind of get to know the owners and there is less likelihood that they’re going to change agencies. Where as, if you go with the bigger agency you might talk to someone and they might get another job. But this way, you’re dealing with people who run the agency and you can kind of review—you know—what you would need. In most cases, I think—you know—certainly, in my case, my son would need to have somebody living here. We have to go with the living caregiver, and so I would want that agency to know a lot about my son and would need to make sure there is plenty of information for that caregiver when he or she comes to know what Mikey’s daily life is really like and what his preferences are. Again, I would make sure that the house is stocked with whatever supplies you need if you need incontinence supplies or medications. If you have to use a home care agency, a home help aid is not permitted to take medicine out of the prescription bottles. It has to be set up in a weekly pillbox, so kind of like a tray. And I would have a couple of weeks of medication set out. In fact, I always do. I’m not anticipating anything happening but I always have that backup. Extra food for the caregiver and someone that the caregiver who can call for help, if help is needed. And certainly, you would want that caregiver to have information about the support coordinator, who already knows your child and knows a lot, and knows the family. Those are things that I think would be helpful in a situation like that.

Shana: Great. When we’re thinking about planning for an emergency, of course, the importance of having our legal documents is really at the forefront because if one of us were to become ill or, God forbid, should pass away, you need to have somebody who is in power to be able to step in and then act. So, we’ll be talking about that in a future webinar, but certainly making sure that you have your own power of attorney that it includes language that allows for money be spent on your family member who is dependent on you, having a healthcare proxy, and of course your will, and making sure that the will does an adequate job dealing with the needs of your special-needs family member.

Special-needs trust, of course, I always prefer having a separate trust rather than having a trust within the will, and the reason for that is that having a separate trust, it can be up and running very quickly. Probate does take time and if you have only a trust that’s funded in the will and there are no other funding sources available, you’re going to have a gap, so that caregiver may have a problem in terms of really putting forth money themselves in the interim, even if we’re talking about just minimal funding. And then I also recommend that whoever that caregiver is or another individual would be a backup trustee, so that you have—you know—you’re the trustee obviously now during your lifetime, but that that other trustee can step in and be able to act. And again, that’s going to provide for that seamless transition, which is really our goal—right—to make as many things easy as possible if we’re not around because members can be struggling with just because the loss of us is just going to be huge, so anything that we can make easier in terms of that transition, we certainly want to do. When we’re looking at the funding source, a lot of people asked me about that, how can they make sure that funds are available immediately and—you know—I talk about, as I said, minimally funding the trust is one great option. Life insurance or retirement accounts, they are going to pay out faster than funds that go through probate, so you can have them named to the trust and that will get funds fairly quickly flowing.

Another option would be the able account. If you give authority to whoever that next caregiver is going to be, to be able to access the able account and that might be in your power of attorney, that they have that ability, then you would they would be able to do that and use those funds, as again, sort of an interim emergency fund. You might even choose to have a small account where that caregiver is a beneficiary, like a pay on death beneficiary, and that way, or a joint account, so that way you would have somebody who would be able to step, and again, just for small amounts of money as an interim measure to be able to pay for that home care agency, for instance, that Trish mentioned. There is a mechanism in the law for accessing estate funds for the benefit of the dependent, but it does require going to court. So, you know, that’s not ideal but it is an option if there was nothing else that was set into place.

So, hopefully, we’ve given you a little bit of food for thought. I know we just kind of touched on some topics, and we hope that you will join us in future sessions to get into more detail with these. Obviously, no one wants to think about their child getting ill or us getting ill. We do think of ourselves as irreplaceable caregivers, I know. But hopefully, this will help you kind of think about how you can smooth that transition out and be ready as you can be in the case of an emergency.

We’re happy to any questions if anybody has. If you want to type them into the chatbox. We’re also going to send out a link for the other—for this webinar, so if you want to—you know—view this again or you want to share it and pass it on to other people. I know there are people who intended to attend but, you know, life got in the way as you know often happens. So, you can feel free to share that and feel free to view this again if you wish to.

And our next seminar will be on June 1. And we’re going to be diving into how to coordinate your legal and your financial needs, and then the series will continue on, on a variety of other topics. We will be talking about public benefits, residential options, all with the goal of helping you develop the plan you need to plan for your child’s future care needs. I don’t see any questions, so I appreciate you spending time with us today, and thank you very much. Oops, we got something. This is a request for an email, for a list of the great ideas to include in the go-bag. We will be happy to do that. I’m actually going to share my email address, which is And Trish, Beth, do you want to share yours as well?

Trish: Sure. Mine is

Beth: And mine is

Shana: Okay. We do have somebody else, who I think is typing in some questions, so if you want to stay with us, you certainly can do that. If you want to jump off, of course, you’re welcome to that as well. So, we’re going to stick on here for a couple more minutes. And thank you, everybody.

So, this individual is asking if a request for tech funds were still being considered because there was a deadline that was given. Trish, do you know the answer to that?

Trish: You know, I don’t. I spoke with my own support coordinator, who is terrific and on top of everything just a couple of days ago, and she said they were still entertaining requests. She didn’t mention a deadline, so I really can’t speak to that. But at the time she said they were still considering.

Shana: You know, I think even though there may have been a deadline, I would certainly continue to try and move that forward. And I know that there is a lot of advocacy from the Disability Bar who is really trying to work on these issues and address. Where we really feel that that individual’s civil rights are in potential jeopardy here, so if you don’t get any successful response, please drop me an email and I’ll see what we can do to try to move that forward for you. Okay. Thank you so much, everybody.

Trish: Thanks all.

Beth: Thank you.

Please join us for the next session in our Special Needs Spotlight Series, “Integrating Financial & Legal Planning for Families with a Child with a Disability” or to save the date for future segments, please click here.

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