The law firm Norris McLaughlin, P.A., is pleased to present the Special Needs Spotlight Webinar Series. In this tenth and final session, “Considering Residential Options,” Shana Siegel, a Member of the firm and Chair of its Elder Care & Special Needs Law Practice Group, will address the resources available in assisting individuals with special needs to determine their residential options.
Watch the recording here or read the transcript below:
Hi there. I’m Shana Siegel. And I’m the chair of the Elder Law and Special Needs Group here at Norris McLaughlin. We have been running a series all summer, and now into the fall of Special Needs Spotlight Webinars. And this is our last one. Today we’re talking about considering residential options. All of these webinars are available on our website. And we have transcripts as well as the actual recordings. So, we urge you to take a look, see what you may have missed, and certainly, you can share them with your friends, and whomever else you think might be interested. All right, so to get us started.
Today, we’re going to be talking about residential options. And I know if you’ve attended any of these, you’ve seen this slide before, but I can’t emphasize enough, I think particularly in the area of what will happen for our individual with special needs, once we pass away. This is one where we all put our hands over our years and go “la…la…la,” because we can’t think about that. But you really do need to think about it, you really need to plan for it, because there are so many different options out there. And it’s going to happen. So, you know, I know people really get—there’s a lot of fear surrounding this subject. There’s a lot of confusion and misinformation. And it really does, you know, end up with people feeling overwhelmed. But there are actually some good options that are developing, certainly not as many as we need. But so, we need to be familiar with what those are.
So, I think the first question we think about is, when do we do this, if we’re going to do it? Are we going to have our children stay home with us for as long as possible? Or are we going to encourage them to find an alternate setting while we are still alive and able to kind of advocate and guide them? That’s a really hard decision and is certainly personal depending on your particular family dynamic and your children’s disabilities. We all know that no one is going to care for them quite the way we are. And no one’s going to have that same level of involvement and, you know, personal attention. And there are a lot of horrible stories out there about things that happen in group settings, in group homes and institutional settings. But, at the same time, most of us do want our kids to experience independence. Our children strive and crave independence. And as I said before, for many times, it’s better to have this set up and in place rather than waiting for the emergency to occur.
So, the first thing to really think about when you start to think about what residential options may be appropriate for your child is what level of support do they need? Do they have medical needs, in addition to their care needs? Can they handle their own medication? Could they handle an emergency? Do they need assistance with activities of daily living? Are there safety concerns? I think for all of us, even if our children are very independent, there’s concerns that they will be taken advantage of, or that they won’t be safe in some way. And it certainly comes into play what their DDD level of care is, and we’ll be talking about that. Are they on the CCW or expected to be on the CCW? Or are they in the supports program, in what tier? That’s going to tell us what funding we’re looking at.
Both our own and much more importantly, of the child themselves. Some individuals want to live independently, they want to live in their own apartment. Others would prefer a more congregate setting. So, those are discussions to be had now, prior to making any major determinations.
What type of independence has your child experienced? Did they go away to school? Have they gone away to camp? How were those experiences for them? Obviously, the more independent experiences we can give our children as they mature, the more likely they’re going to be ready for living independently. So, those are all considerations to really put in place now, and again, talk about now and talk about over and over again, so this is something that you’re really prepared for when the time comes. Some people have the luxury of having the ability to have kind of in-between set up in the interim. I have a client who has a little apartment in what used to be the garage in the parents’ home, has a separate entrance, separate bathroom and everything. So, she is quite independent, but she does, you know, rely on her parents and other family members for support as needed. So, you know, that might be something that if you’re, you know, if your structure would allow for, something to consider whether that’s a basement, a garage, or something, as kind of, you know, a possible step towards independence.
So, one option that families might consider is remaining in the family home. So, this would probably be in a case where you’re going to have your child living with you, until such time as that’s not going to be feasible anymore until you pass. And then you want the child to be able to remain in the home throughout the rest of their life. If this is an option that you’re considering, you might consider leaving the home outright to the child. That is okay, and it’s not, it doesn’t impact their public benefits. However, it does result in there being a potential lien against the home for any services that were provided after the individual hit age 55. You could also leave the asset in a special needs trust. If it’s in a third-party special needs trust, then there would be no recovery upon your child’s death against the home, which means it could then pass to other individuals. If it’s a first-party trust, of course, there would be recovery against it. So, these are all things to consider in terms of how you might want to hold the home if you’re going to do that. And thinking of what the care options might be in this situation, meanwhile, your child could be living with other family members, or with what we call a support family, which would be someone who was hired to live in the home with your family member.
And there are a lot of different considerations and options here. We’ve worked with a number of clients in developing plans moving forward for this type of situation. You can also have live-in support. And that might be through private pay, through funding through the trust, or through DDD, self-directed budget. You could just have daytime support if your child is able to live independently, but just needs in-home supports during the day. And again, that could be privately funded, funded through DDD or through Medicaid, if a personal care assistant would be sufficient in that situation. When you’re dealing with living with other family members or support family, you need to really consider if it’s going to be trust-funded, issues related to taxation, related to, are they going to be charged rent. And we’ll talk about all of those issues more further along in the program.
A lot of people consider a shared housing arrangement where the home that the child grew up in now is shared with another individual with special needs. So, if we’re talking about shared living, and this can really be a wonderful solution for a lot of families. However, there are a lot of pitfalls and a lot of things to consider and plan ahead. And again, we do work with families and making these plans. And as you’ll see, there’s a lot of legal work as well as you know, other issues to consider. So, the first consideration is, how is the property going to be owned? Again, as with the prior slide, is it going to be owned individually? Is it going to be owned through a trust? Or is there going to be some type of corporate or nonprofit entity that would own the residence? If we’re talking about housemates coming into the home, typically they would be paying rent. Although certainly, if we had some kind of shared arrangement with shared ownership in an LLC, that might not be the case.
Insurance Is a Major Issue to Consider
I have learned from experience that it is difficult to insure these properties. And so, you need to really think about is this going to be–are you going to have just a simple umbrella policy or how are you going to do that? And it becomes particularly difficult if it’s not owned by the individual—I’m sorry—owned by the individual or the trust, but is owned through an LLC. You can have a little bit of difficulty there with the insurance. So, you want to get on top of that early on.
Oftentimes, live-in supervision is going to be required in this situation. And so, we need to find who are those caregivers going to be. Is it going to be an extended family member or is it going to be a paid caregiver? And even if it is going to be extended family, maybe they are going to receive payment as well. It’s really important to have a caregiver agreement. You want to outline—really think about with the individual, we’re thinking about hiring all of the possible scenarios. What happens if that individual has a family of their own? Are they going to want to continue on this role? How are we going to handle vacations? How are we going to handle illnesses, whether that’s your child getting ill, or them getting ill? Are they going to work outside the home? So, all of those things are things that you really need to flesh out in an agreement and address ahead of time. There’s a lot of issues surrounding compensation and taxation issues. Are they going to live there tax free? If so, is that an income tax issue for them? So, you really need to again, flesh all of these out. Once again, thinking about holidays, illness, respite? Are these all things that are going to be handled under the DDD budget, or are you going to have to go outside of that, to address that? Because, you know, the last thing you want is the individuals who are caring for your loved one, to feel overwhelmed, to feel overburdened, to not be able to take a vacation. They’re going to need that respite, just like you do. And so, it’s important to build that into the plan.
So, that would be the agreement with the other family, in terms of how everything is going to be handled from financial issues, you know, household costs, to dealing with the important contingencies. What happens if there’s a disagreement? What happens if someone loses their benefits? What happens when your child passes away? You know, what’s going to happen with that property? Is that other family going to have to move out? How is all of that going to work? So again, plan, plan, plan. You don’t want to kind of go along and see what happens, because that’s when we see these types of situations fail, and it can be very messy.
It would be important to consider having some funds and a household account that the caretakers can access in order to pay for those little things that come up. Now, how are things like, you know, everyday products that need to be in the house? How are those going to be paid for? If there needs to be a repair a plumber or something? Are they going to have to go to the trustee every time they need to have those expenditures? Or is there an account that they have access to that they can pay for those things?
So, if you have a caretaker in the home, or there’s another family involved, are you going to include them as a fiduciary for your child? Perhaps we’re looking at just a rep payee because they’re going to have access to small amounts of funds? Are they going to be a successor co-trustee? Are they going to be a successor guardian? Those are all things that you want to think about. But again, you want to think about what happens if the relationship doesn’t work out. You can rename and have this individual involved or the other family–the parents of the other family involved, and they are your guardian for your child. And then the living situation doesn’t work out, is that really, you know, something that we want to have going moving forward? Maybe it is, maybe the bonds are strong enough that you do want to do that. But you really want to go into that with your eyes wide open.
Many individuals with special needs are able to live independently, and they choose to do so, and that’s really the best setting for them, gives them the most independence. They can do that in private market housing, independent supported living, or in supported housing through DDD. And we’ll talk about that. There is a voucher system which is available, which is private fair market rent, which we’ll talk about in more detail. There are also subsidized housing options, low income, senior and disabled housing is available. Although often they have quite long waitlists, so it’s a good thing to get on those waitlists early. And of course, then there’s just market-rate apartments, regular apartments that you in private pay for. And you may be eligible for a voucher for those.
So, to get specific, there’s the Supportive Housing Connection Voucher. You can receive this through DDD, so you should be speaking with your support coordinator to find out more about this. This does provide coverage for both private market housing, residences, and apartments, as well as licensed settings. So, it may be just an apartment, in a regular apartment building, it might be in a supportive housing building, which will be a licensed setting, it might be a congregate residence, a variety of different options out there. There is a listing of published fair market rent, which you can find online. And that will tell you what your guidelines are, what DDD will allow you to pay. So, you have to find an apartment that’s published rent is within those guidelines. But generally, not too difficult to find that. If you are approved for the voucher, then you’re responsible for paying your child, who of course, is responsible for paying 30% of their income in contributions. So, it can be a really wonderful opportunity to live in an integrated setting. And it also can be used for a variety of settings like the shared housing option that we talked about. The landlords can charge utilities separately, and there are a few other fees that they can charge. For instance, an activity fee if it’s a kind of supported housing. So, you should be aware of what all of those fees and charges are, and know clearly what is included and what isn’t. So, you know, on top of your 30%, what other fees you might be being charged.
Of course, there are DDD licensed settings. These are just a couple of so many that are out there. And these fall into pretty much two categories. We think of traditional group homes, and then we think of supervised apartments. Now, there are other types of licensed settings, so there could be a home, a single-family home that is serving as a licensed setting, similar to a supervised department. But what these DDD settings have, is, first of all, they are inspected, and they do all provide 24-hour on-site staff. Whereas, you might find other non-licensed settings that are specialized, but don’t have 24-hour on-site staff, and have much less rigorous inspections and quality standards that they’re expected to meet.
Co-housing, or also often known as Integrated Supportive Housing, is something that is becoming much more popular and is a great option for some individuals. It’s a community that has disabled individuals and non-disabled individuals living side by side. So that may be in an apartment building, it may be in a shared home. But it’s really intentionally built with the intention of having disabled and non-disabled individuals in the same setting. And these are just a list of a few of the options that are out there. But there’s certainly many more, and this is, as I said, kind of a growing trend, is to have this type of integration. So, if we’re looking at services that are available, certainly we have the residents, but quite often our family members are going to need some type of service in the home. For that in-home support, maybe it’s very similar to what they’re getting now in home. So, we know that there are two categories here. We have the Community Care Waiver, and we have the Supports Program. If your child will qualify for the Community Care Waiver, if their level of care is high enough, then you would need to get yourself on that waiting list as soon as possible, which generally you can be added to the waiting list once you are age 55. You can do so, and then because there is quite a long wait on that list. So, you want to do that as soon as possible. If you do not get on the waiting list, or if you don’t come up to the top of the waiting list by the time your child needs services, or you’re looking for services, then there is another emergent way, which is if the individual is in imminent risk of homelessness. And unfortunately, this usually happens when we have an individual who didn’t plan ahead and they ended up become falling ill or passing away, and now their child is, you know, the question is what next? Right? The child can’t live on their own, there wasn’t a plan put in place for supports for them in their home, and so they’re needing to go to, to get services. And of course, that’s really not what we want to happen, right? You don’t want all of a sudden, your child to be whisked off to someplace that they’re not familiar with, you know, especially at a time when they’re likely dealing with the grief and, you know, tumult of not having their family member there anymore.
With regard to the Supports Program, we can get services in a number of different ways. And many people use a combination of agency-directed services and self-directed services. And so we might have some caregivers that are self-directed, we might work with an agency for others, to bring in the services that we need. And here support coordination is really key. And support coordinators are probably going to be your first line of contact in terms of helping with your residential plan as well, whether that’s getting you a voucher, or considering what other options are available to you. This is just a quick overview of the services that are included under the Supports Program, and many of you may be receiving these services already, or your children are receiving these services already. But of course, many of them, you might not be receiving or their services are quite limited. But in the case of a new residential option, they would likely see a major increase in those services. So, these are all areas to be familiar with and to talk to your support coordinator how your child’s needs might change if they were to be living outside of your current home.
There are other state services that people may not be familiar with, and these can be in addition to, or instead of services under DDD. Not everyone qualifies for DDD, and particularly if we have someone who has physical disabilities, not intellectual development disabilities, then they may be coming under these programs. So, the PPP program is a Medicaid-based program. It provides personal care assistance, as well as other modifications and equipment in the home. And this can be really important for particularly individuals with physical disabilities, to provide them with the independence that they need and desire. And, you know, can also bring in some extra hours for individuals who are also getting services through DDD.
There’s a non-Medicaid program, which is aimed at getting individuals who are not on Medicaid, but have a physical disability, which impacts their ability to handle their activities of daily living independently. This is a county-level program called the Personal Assistance Service Program, and it allows for personal assistance, essentially PCA services for these individuals, as long as they are going to school, job training, work or volunteering for 20 hours a week. So, it’s really some care assistance in order to allow that individual to get out and get into the community. So, that may be a program that you might not be familiar with, but if you’re not on Medicaid, that could be of real use to you.
And that kind of leads to the use of technology. I know with both my seniors and my individuals with special needs, that technology is playing a much larger role to allow individuals to be able to be more independent. So, we have all kinds of devices for medication reminders, cameras, and smart doorbells. I know I have clients who say “well, like, you know, I see when my child comes back from their day program, I can say ‘hi’ to them and, you know, just check the doorbell and see when they came in.” Make sure that they’re not leaving or anybody is coming into the home that shouldn’t be. There are all kinds of other monitors for the bathroom. If you’ve been in the bathroom too long, if the fridge door hasn’t been opened in a day, if the front door is open, controlling thermostats, fall alert. So, all kinds of things. It’s amazing the technology that can be used to allow people to remain independent in their home, and potentially not requiring that group home setting, and it deals with some of the safety issues that you might be otherwise kind of pushing you towards a 24-hour supervision model.
When we’re dealing with residential issues, there are a lot of financial pitfalls that I’ve seen clients fall into. So, you really need to be aware of what those are and think about them and plan for them ahead of time. Of course, in New Jersey, our property taxes are very high, so we need to consider how we’re going to be able to do that. Throughout the lifetime of our children, are there going to be sufficient funds to pay the property taxes throughout time? What if the home needs a new roof? What if it needs other major repairs? Will my child have somewhere else to go if there needs to be repaired, and they can’t live in the house for a period of time? So, really thinking those issues through.
The issue of in-kind support and maintenance we’ve come back to again and again, and if you’re not that familiar with that, we have talked about it at length in some of our other webinars. The issue is this. If a trust is paying for the shelter costs, whether that’s the rent, the mortgage, the property taxes, any of those shelter costs for the individual with the special needs, that is going to impact their public benefits. You’re going to see a reduction in public benefits. That may be okay. That may be a tradeoff that you have no problem with. But you should be aware about it, because it is considered in-kind support and maintenance. It’s also considered income for Medicaid purposes. And so, if there are other income sources, you need to realize that that could put the benefits at jeopardy. So, you need to have conversations with professionals such as myself to really make sure you understand those issues.
If your loved one is living in a private setting, under a DDD setting, they need to contribute, there is a cost of care. As I said the voucher is 30% of income. But in other settings, there are different amounts. So, you need to know what those are, and if that’s something that is sustainable for your family member. As I mentioned before, utilities and other fees: There are often fees for social programming there is can be activities fees, utilities, a variety of things, some communities have expected donations. So, those are all things that you need to get very clear upfront. I’ve had situations where people have been interested in a particular setting, and then all of a sudden there is a donation request that they were not really prepared to make. So, make sure that when you’re looking at various options, it’s clear to you what all of the costs are going to be over a period of time.
What happens if you have a shared housing situation and the housemate leaves, or God forbid, passes away? How is that going to impact the financial plan and the financial solvency of your situation? So, that again, we need to have backups and contingencies in place.
Loss of Public Benefits
Your child or the housemate could lose their public benefits for a variety of different reasons. And if that happens, again, what then happens to our care needs, our services, and any of the vouchers and programs that may be supporting the residents?
If your child is fairly young at the point that you pass away or you’re no longer able to care for them, and now you’ve got a trust that is going to be financing a residence and care options for many, many years. Are there sufficient funds? What happens if the trust is depleted? Can you put a plan in place for what would be the next steps What could then happen? Are we going to then be moving to a DDD-based model? So again, planning ahead is really the key. And as I said, planning early. So, some of the things we really want to think about, we want to get on those waitlists. Are you age 55? You should be on that waitlist already for the CCW if that’s an appropriate level of care for your child. Do your research, find out about the different programs that are out there; there are new ones developing every day, there are new residence is opening up. I personally am opening a residence. So, you know, you really want to find out about what’s out there for your child, what might be an appropriate type of option, and then going deeper into specific options that are out there. You know, what services are they going to need? What support coordination agencies are you happy with? So, do all of that research and understand all the options that are out there? If you’re thinking about, as many families do, starting a private residence yourself or turning your home into a private residence, find out what funding sources are out there. And we’ll talk about those in a second. You know, what, what could you do to make that work, really understanding all of your options.
Beware of regulatory and benefit changes. Now, what happens if a Medicaid program is cut back? What happens if DDD is cut back or we don’t have, you know, all of the options that are available now, the voucher disappears, these are all possibilities. And so, you have to have backup funding options for if that does happen. You have to know, well, if I can’t afford to do X because I don’t have a voucher, or I don’t have, you know, this program doesn’t provide this level of service, then what are my other options out there?
Consider all of the contingencies. This is where you get to be a little doom and gloom. And you have to really think about, well, what happens if my caregiver gets ill, my caregiver passes away? What happens if, you know, there’s a rift in between the roommates or between the roommates and the caregivers? Really thinking about what would happen. How can we undo this plan? And, you know, what are our other options in those scenarios?
You need to have backup plans; you need to have successor fiduciaries. So, who is going to be successor trustee? Who’s going to be rep payee? Who’s going to be guardian? And will that change depending on what the residential option is? If my child is going to go live out of state, am I going to have somebody else involved. So, these are all things that you need to think about.
We are considering who’s going to be caretaking for your child, who’s going to be handling the finances, who’s going to have fiduciary roles. It’s important to think about checks and balances. You’re not going to be there anymore to watch over your child. So you need to have other people in that role, who are going to watch over each other, whether you have an agency involved, you have private caretakers, you have family members, you want to have people who have different interests, who are going to have the ability to watch each other, and make sure that your child has the funding, and the care, and all the services that they need. So, you know, make sure that you have not everything invested in just one person, in one relationship. Especially, if you are trying to build a program on your own, consult professionals. But really, for any of these scenarios, it’s important that you understand all of the factors at work. You understand how the voucher works, how all of these programs work together. And so, it would behoove you to speak to the professionals in the field who have been doing this, other families who have done the options that you’re considering. So, you’ll really understand what’s involved and where some of those pitfalls can be.
Again, if you are doing a shared arrangement, or if you are going to be in independent living, you should have contracts, leases, and agreements in place. You don’t want to do this stuff on a handshake, there’s too much involved. So, if you are hiring a caregiver, you need to have that caregiver contract involved. If you’re going to have other people living in the home with your child, you need to have residency agreements. These are all important and all really protect your child when you won’t be there to protect them. So, you want to make sure that you have those in place plenty ahead of time so that you can make sure that if anything goes wrong, you’ve got all the protection built-in.
But most importantly, you really have to stay flexible. Because we don’t know what the future holds. We don’t know what the state of programming is going to be in 10 years, 20 years, 30 years from now. So, you want to, while you are going to put programs in place now, you need to be able to have the ability to change those, to consider maybe it made sense for my child to be at home now, but maybe it might not at some point in the future, if that perfect program opens up, that really, you know, is a better fit for your child. And so, you want to be able to have those contingencies, consider them, speak with your family members who are going to be implementing the plan about that flexibility, and that it’s okay to change in the middle. Even if you’ve put everything into creating a certain environment, that environment, you may need to change. And it may make sense to change. So, giving everybody permission to do so, and building the flexibility into the contracts and the agreements, and all the fiduciary roles to be able to change when you need to.
These are just a few resources. Certainly, if you are going to reach out to any of your nonprofits, the ARC has a lot of information, JESPY House, Rose House, all of the programs that run group homes and supportive housing are going to have great information for you. But these are some of your other organizations to take a look at Supportive Housing Association, Supportive Housing Connection, that’s the voucher. And if you are considering purchasing a home, or modifying your home, or using your home for this type of congregate living situation, there are some loan programs and grant programs that are out there. So, those are all things to research, get information, talk to other families, talk to professionals, and get creative, because there is a lot of opportunity for creativity, putting together a program of services and residence that’s right for you and your family, which could be totally different from what, you know, what the person, you know, another family is doing. You don’t have to have your child go into a group home if that’s not right for you, and for them at the time that you can no longer care for them. Or even just earlier, there’s no reason that this has to wait. Right? This might be your child is, you know, a young adult and they want to choose to live independently. So, talk about that, research it, plan for it, and then help your child soar.
Any questions and certainly anybody can reach me to talk about their specific situation at firstname.lastname@example.org. But if anybody has questions now, I’m happy to take a few.
Okay, thank you for joining us. Thank you for being a part of this program. And again, we do have on our website, you can access Norris McLaughlin, you can access all of our blogs and webinars and recordings of these programs for this whole webinar series. Thank you.
If you have any questions about this post or any other related matters, feel free to email Shana at email@example.com.