Hadiyah:

And that’s how this is going to start. Hello, welcome everyone joining us. So happy to have you here for our second installment of our community panel for 2025. This again is put in partnership with SV@Home in which you’re going to have someone from that organization joining us at the very end of this presentation. This is Financial Foundations Sustaining Housing and Care for a Lifetime. I’m so grateful that you’ve come and you’re willing to listen to our webinar today. If you’re joining us live or you’re watching this recording afterwards — this is recorded in front of a live audience and our panelists are here to answer your questions. We’ll leave some information at the end of this so that you can engage with our panelists or ourselves and we’re happy to have you again. This particular webinar is going to be on financial foundations sustaining house care housing and care for a lifetime of course my name is Hadiyah Fain and I’m signing on for Life Services Alternative. Thank you so much for joining us today! We’re going to have a bunch of really great speakers joining us and talking about different perspectives that they’ve lived and they’ve had as well as a couple of organizations that are joining us and they’re going to share from their many experiences with families and consumers such as yourself or maybe your loved one. That being said I’m going to take a couple moments because we’re going to do some quick housekeeping things on our end — before we hear from our panelists we want to hear from you. We’d like to know you hearer about us, then if you have a relationship with someone who has I/DD or intellectual or developmental disorder or disability I should say, and then we also want to know what’s the biggest concern that you have when it comes to the future of housing and care planning for your loved ones um with I/DD. So take a moment — I’m going to give it a couple minutes for you to review the questions, answer the questions, and give us your honest thoughts and opinions and we again just want to hear from you and how you came to find out about us and what you’re looking for. Just give it a couple more minutes here… a couple more seconds here… all right thank you so much for your time and thank you for filling out our questionnaire. Again, as I mentioned this is going to be a panelist style conversation. At the end of this we’re going to open it up for Q&A — if you have questions for myself or for our panelists at any time and you want to ask us questions or you want to maybe ask a question anonymously, go ahead and go to the bottom of your Zoom application, find that chat feature or the Q&A feature most preferably and put your questions in there and we’ll be willing to answer those questions directly on either live or write them back to you. Thank you again so much for joining us today and without further ado I’d like to introduce our first speaker and panelist the Executive Director of Life Services Alternatives— Dana Hooper. He’s going to talk to us about his lived and leadership perspective. Thank you so much Dana.

Dana:

Thank you Hadiyah. It’s great to be here today. I’m going to briefly talk about my journey and then I’d like to share with you some lessons that I’ve learned. My journey started many years ago with my son being diagnosed with intellectual disabilities or developmental delays as they would say in those days and eventually it led to – like with most a lot of families with this notion of – where will Brent live as he gets older? In our case, we’re very fortunate to be able to find a a great living situation for him where he lives in a home with two roommates and is supported through supported living. He’s been successfully living happily, I might add and somewhat independently in his home for going on 30 years. Later on my journey, I got involved in basically giving back and ultimately came to be Executive Director of Life Services Alternatives and of course I’ve learned an awful lot over that time period as I stayed quite involved. Brent’s solution, you know of course may or may not be a good solution for others, but maybe worth just talking a little bit about what I learned. First of all, I learned that you should be aware of and apply for all of the various public benefits that exist whether you think you need them or not and I’ll give you a good example – Section 8 you know Brent’s never going to need section 8 – he’s going to live at home forever. Oh actually, we applied for Section 8 and like eight years later got it. Section 8 for the past 25 years has provided a roughly $100 a month in rental cost for Brent so he’s able to afford much better. He’s much better positioned to pay his rent, but there’s others – SSI and IHSS and of course Regional Center benefits – so be aware and make sure you apply. I don’t actually believe that you can start too early and I was very fortunate in that somebody very early on said “Boy you really need a special needs trust.” And I had my mom say “Not only do you need a special needs trust, but um you need someone to fund it.” And I would love to fund it — you know your other kids can go to college and you’re saving to help them — why wouldn’t we save to help Brent so you know explore all your options. Basically utilize all the resources that are out there and there’s a lot more now than there was 30 years ago and be sure that you take the time or make it a priority to really do that justice and spend the time to explore options. The other lesson I learned is you’re going to need housing — well I guess what I learned is that everybody actually needs a place, but I need a lot more than housing. Not only  does Brent need a place to sleep, but he needs a place that will provide support and  we as  his family members need an organization that has a capability to do a lot of administrative things because this thing has to run well past us being able to be involved so it’s not just about the housing it’s about the whole package — siblings gosh I could go on and on but I guess what I learned is that you got to treat your special needs child and his siblings equally I fell  into the trap of you know you’re neurotypical so you need to be able to do all these things that normally people don’t expect you as a child to do well. I think that was wrong and so don’t expect too much from the siblings and certainly don’t expect it too early. I guess what I learned is that — involve them always… involve them early and keep them involved and over the long haul they will rise to the occasion and probably make you proud, but don’t put too much in the way of a expectation on them too soon because that can be very tough so with those four lessons — I will you happily yield to the next speaker Mimi. 

Hadiyah:

Thank you so much Dana and thank you Mimi. Mimi, I just wanted to say before we move on to you — there’s a couple things that Dana mentioned and I know we’re going to go back to this at the end — when we ask questions, but there was a lot of things that he was fortunate enough to get — that type of tip off or support. We’re now gaining his wisdom. If you’ve just logged in or you’re you’re planning on staying for the entire time, the rest of this panel is also going to share other wisdom from other parent perspectives, but then we’re also going to talk about some very important resources and point you in the direction of those who you could follow up with to get some financial help and tips and planning. Get your questions ready and put them in the chat. The bottom of the screen has a Q&A feature and be ready to ask your questions while we listen to Mimi and hear more of what she has to say. She’s going to help us really hear that solid parent perspective. 

Mimi:

Thank you Hadiyah and thank you Dana for that — that was very interesting. My name is Mimi Gianini and my daughter Morgan is 23 years old. She has I/DD and the first thing I’m going to talk to you today is about my family’s financial journey with raising a child with I/DD and our journey began when my daughter Morgan was about 18 months old and she was delayed in speech and crawling and walking and this led to our first experience in dealing with doctors and evaluations and learning about the San Andreas Regional Center. She was able to get evaluated through her school district which was great and we also felt like we wanted a private evaluation — so we decided to spend money on a private evaluation and that was the first of many expenses that has been throughout our journey. When Morgan did start school, she was receiving speech therapy, occupational therapy and other services. Although it was only a couple hours a week during the school program, we felt like she really needed more so we ended up paying privately for additional speech therapy, additional occupational therapy and different services that we thought would benefit her. And at that time we were not funded through any of the resources that we were using so initially we had a lot of out-of-pocket expenses. Another aspect of our financial journey was the medical side — when Morgan was just four years old she had her first seizure and we were unaware of this condition and that led to ambulance rides, hospital bills… very unexpected and again more doctor appointments, doctor’s evaluations of course. We had insurance, but insurance didn’t cover everything — so from the very beginning there were a lot of unexpected expenses which were unfortunate, but we did everything we could to help our daughter at that time. Other challenges and lessons that we encountered throughout Morgan’s life — some of the challenges were with school districts. Our first challenge was when Morgan was 5 years old and her school district wanted to put her into a county classroom where the students were nonverbal and non-mobile and Morgan is verbal and mobile and we wanted her in a classroom where people were parallel to her level. The school district was not budging on what we wanted and they said “No Morgan’s going into this county class.” And we said “There’s no way I’m putting my daughter into this class.” As a parent, you know what’s best for your child and you know what your child needs so listen to your heart and what you know because nobody knows your child like you do. We actually ended up having to change school districts because we were not happy with what we were offered. When we did change school districts we were very happy with where Morgan got placed but on every year was a challenge because every year was a new teacher, a new program and standing up for your child — advocating — making sure they’re getting everything that they needed in that classroom and some teachers were maybe not so on top of the things — on top of the goals, so just being really on top and advocating for your child and working with the teachers every year to making sure your child gets all of the services that they need.Advice for families — planning long-term care — try not to get overwhelmed. I know it’s very easy to get overwhelmed. There’s so many services, and you know you’re emotionally worked up about your child and what’s going on and people are telling you from all sides of what to do you — should do this — you should do that. So number one, try to relax. Try not to get overwhelmed and take one thing at a time and focus on one task at a time. Like Dana was mentioning, we have IHSS. We have SSI — San Andreas Regional Center people were throwing these acronyms at me and I said “Oh my gosh, what’s that? You don’t even know exactly what’s going on and take your time to learn what’s going on.” Focus on one task at a time. Another thing that I would recommend is getting your child conserved in a conservatorship. We were able to get Morgan conserved by the time she was 18 which was very helpful in dealing with doctor’s appointments — medical notes when you’re the conservator, you’re in charge of her medical records and the doctor records and you can help your child with all of that. I would also highly recommend getting help with your conservatorship. We actually hired an attorney to help us because the process is needless to say a lot of details — a lot to do so we hired help and also as Dana was saying — get signed up for IHSS SSI. Use the government support that you can and one lesson I learned is it takes a village. Don’t be afraid to ask for help. Don’t be afraid to accept help. When people offer, say yes because it takes a lot and the best thing you can do for your child is to love your child which is really the most important thing. They need love and support from you.

Hadiyah: 

Mimi, you’re very well spoken — so many great points you and Dana have brought up. Two things I was just going to say before and thank you so much for sharing before we move on to the next person is that I heard you talk about conservatorship. We have a talk that we did on Monday — ended up being a lot about conservatorship and pointing to people who do have that approach of conservatorship and then there’s people who their son, daughter, loved one who were on that particular series on Monday that’s now up on YouTube.They didn’t take that route and so finding out if that’s right for you — I would highly encourage you, just like Mimi said  if it’s right for you — learn about it. The second thing that I really wanted to push on is navigating SARC which is Friday’s talk so if you’re interested in learning more… at least getting pointed in the right direction — feel free to join us on Friday. We have another webinar you can go to our website in order to register for that, but then one of the main takeaways — what bravery, what resilience you’ve had Mimi and just navigating some very serious and very scary financial situations with your daughter at the age of four… being taken away in an ambulance after having a seizure — my god. I don’t know what grit, but then also navigating and disagreeing with the school system and then finding the right thing for your daughter which seems to be an ongoing theme within your relationship with your daughter and also what that means for you guys financially and then getting help. Now we talked a little bit on Monday about community, but tonight if you’re saying “What community?” We’re your community. That’s why we’re doing this community panel. That’s why these people who you see coming on here tonight are not paid actors — they are coming here out of the goodness of their heart and they’re willing to volunteer their time to give you points, advice, and tips in order to point you in the right direction to hopefully become a part of your community and I know it’s certainly true of this next person who I am going to introduce as our next panel panelist — Michael Gilfix is an advocate and a friend of our community and he also happens to be a very good lawyer. Would that qualify? Attorney? Should I use a word, attorney,  to describe you Mike? 

Michael:

That’s fine.

Hadiyah:

The bottom line is — what we do, not what we’re called so we’ll in a moment welcome Michael. Please tell us a little bit more about legal and estate planning.

Michael:

Sure — a two-hour talk in 10 minutes… so what Mimi said about loving your kid – that’s the core one of the ways to express… that really is to take care of planning. It’s essential… Dana talked about the special needs trust for example, but just a word about me – I started working in this field in 1976. I started the first free legal services program for folks with disabilities in the state so I’ve been immersed in these government programs. You’ve talked about special needs trusts forever… deeply involved comprehensive experience. The core estate planning, the kind of planning tools you need to put in place just so that you can take care of your child – you don’t want to lose government benefits. The benefits that we’re talking about – they can be lost if you plan inappropriately. You can lose housing that you thought you were going to have in the family. So let’s go through the basic documents first. The special needs trust is the trust that’s established to hold assets for the benefit of your child. Any amount of money in that trust doesn’t interfere with eligibility for government benefits so it’s core it’s essential and it’s not one-size fits-all – it’s not off the shelf. Everybody’s different disabilities lead to different issues, different provisions, different powers so it’s not one size fits-all. Be careful about super simple forms. For you the parent – a revocable living trust… you want to make sure there’s no probate. You want to make sure your plans are going to be honored – whatever they may be in terms of the distribution of your estate. Durable powers of attorney for everybody, any age, advanced healthcare directives to be sure that somebody has authority to make healthcare decisions for you if you can’t and you should be explicit when we draft those documents. Again, no simple forms. What are your wishes? What are your goals? What are your worries? Provisions in an appropriately drafted document, address all of these things. Again it’s not one-size fits-all. It’s not to check the box – it really should be personalized to each and every one of you and maybe as something of a counterpoint we obtain conservatorships for many families… we always stop, we always say “Wait a minute, is there a better way?” And very often there’s a child turning 18 who has a sufficient level of capacity to sign a sophisticated power of attorney and an advanced directive and then we can deal with access to medical records, the ability to speak with physicians – so we are actually maybe not in the mainstream. We view conservatorship as something that’s necessary. If it’s necessary in at least half of our family situations, we don’t get them and we don’t see any downside. You can always get it later, but just to automatically do it I’m actually a gentle critic of that approach so it’s good to hear other sides. Not all right powers of attorney conservatorships when necessary, that means powers of attorney and advanced directives for the child with I/DD again many times there’s a sufficient level of understanding that can avoid all kinds of costs and hassles with the conservatorship courts. We work really hard to stay out of the court system whenever we can… Really important this next point – housing, which is kind of a focus here… is the most essential ingredient. Where is your child going to live? If you’ve got that worked out – hallelujah, but let me tell you why so many family plans fail or are in jeopardy… Recently we had the passage of Proposition 19 and here’s what it does… let’s say you have a rental home… a duplex and you want your child to live in that home… you bought it years ago… you’re paying $8,000 in property taxes now… it’s worth 3 million… Upon your passing, property taxes are going to increase to about $35,000 a year. So countless families –- there’s no exceptions for special needs families – none. So there’s a complete reassessment in that example now the trust has to come up with an extra almost $30 extra thousand per year just to pay property taxes – not to deal with quality of life, not to deal with how not to deal with food and shelter and all of these things so it lies in weight for those who are not aware of this problem. There’s only a partial exception for your residence if you want your residence to be the home your child lives in. There’s a partial exception – the first $1 million in reassessment is forgiven so if your home is worth $4 million, the new assessed value would be $3 million. Property taxes go up to about $33,000 a year. If you don’t know about that – you won’t be dealing with it. If you don’t deal with it, you’re handing a significant problem to the next generation. It might eliminate the opportunity to keep that property in the family, for the benefit of your child or for anybody in the family so the point is Prop 19 compels the sale of so many homes where the family wanted to keep the home in the family so this goes beyond just a special needs trust. Make the point that any advisor you get, has to understand many aspects of tax – not just what a special needs trust is because frankly, the elements of a special needs trust are not that complicated – understanding all of the issues that affect that kind of planning– that’s where special expertise comes into play. Tax– we don’t like it, but you got to know about it. How does it intersect with SSI IHSS? All of these programs that you guys are beginning to learn about and we’ve worked with for well about 40 years – essential. Where is your child going to live? I mean, if that isn’t often the core question – There’s not enough group housing. I mean that’s what LSA is all about – trying to find more resources and the waiting lists are off the charts and those are folks who are sufficiently sophisticated to learn about SSI. To get on the waiting list – the vast majority don’t know about it… don’t do anything so again massive problem. Key steps you should take – what should families do to prepare? Learn about Prop 19. I should have said – do a special needs trust – you should but again that’s a vessel. That’s a tool – that’s not a solution. It’s part of the planning. You have to take a step back – learn about this property tax problem and we have some videos on our YouTube channel called Gilfix Law. We have videos about Prop 19 – what the challenge is and I’ll just tell you, we can avoid the property tax increase which usually makes the difference between the ability to keep that house in the family or to not keep that house in the family. Got to prepare a special needs trust choice of the trustee. That trust is often the most daunting, most challenging thing. Who’s going to manage that trust? It’s not somebody you love the most – it’s somebody who lives nearby, who is capable, who is responsible. There can be a 35-45 minute discussion about that issue because very often families don’t have somebody they can choose. There are professionals who can do this – you have to understand the issues and the options on that. Obviously be aware of the Regional Center – how all of these things fit together. My last comment – and one gigantic exhale is – these are troubling times. We do talk about IHSS, we talk about regional centers, we talk about medical – everything is in jeopardy right now with what’s going on with this administration. Love it or hate – it’s a fact. The bill that’s in Congress right now would dramatically cut Medicaid benefits which are medical so what’s going to happen with Section 8 programs? What’s going to happen with all the programs locally that depend on federal financing? We all and the families we work with depend on them. There will be fewer resources, at least for the next 5 to 10 years and you have to deal with that and that means there needs to be enough money in the special needs trust. I don’t believe that you should automatically leave everything in equal shares to your kids.What are the needs? What’s the situation? Are some kids rich? Are some kids poor? Are some kids in need? So it’s a discussion. Nothing should be automatic. No checking the box. Talk about it with a capable advisor. Make a decision that makes sense – that puts it all together. We could go on for another 30-40 minutes – there’s my time limit. 

Hadiyah:

Let’s move on Michael – that was wonderful. Let me say this – we did not pick the panelists that we picked to come on here for everyone to have the same view or same opinion. We all have the reason why we wanted you to come on is because you can give perspective that we didn’t already have, but more than that I’m hearing every person who you meet, every family who you meet has different needs and those needs vary as diverse as we are here, in America, and the Bay Area and beyond that’s how varied it is even. As you were talking, I was trying to think if I could list five people that I trust and running out of ideas after three. My idea, if you have five – you’re ahead of the game. You’re above average. That’s right and then I started thinking about who I’d leave my cash to and you know there’s a lot of things that we all think about, but then the complexity of again some of the things that we can’t control like what’s happening in government right now and then some of the other things that come with taxes and around those taxes is especially when it comes to housing. Some of the numbers really sound daunting when you think about it. You’ve been listening to this and Michael and a lot of the panelists have thrown a lot of information at you – I want to encourage you again at the end of this, we’re going to open it up for questions. The full transcript of this talk is going to be online so you can read through what’s being said and then also we’re going to have this up on YouTube almost as immediately after this is over. Michael I want to thank you and I also want to point out a couple of other things that I heard you say – all of this is driven by the love of your child right and so your child deserves sitting down and really thinking these things through and not you trying to figure it out by yourself or trying to trailblaze if you will, but getting with a professional such as yourself and kind of sorting through step by-step process that not these kind of easy one two three-step forms are – not are not right for anyone because no one is a one two three-step person. Everybody has their own complexity and their own things that they need to think through. The other thing that I heard you say and I think is possibly one of the most important before I hand it over to our next speaker, is that there needs to be some sort of preparation. We don’t want to be doing this with a gun to our head and so if I’m hearing you correctly – today’s a good day to start. Thank you so much Michael –you were gonna say something else?

Michael:

Oh no, let’s move on – respect time.

Hadiyah:

All right, absolutely – lots to say. Okay so that brings me to our next speaker which is Madeline Handy. She’s coming from CalABLE. Madeline has been very patient with us and also very willing to come and speak to you all today – both here on this call and also for the recording. She has a few slides that she’s going to share with us, but she’s going to talk about a financial resource and we’re going to have a couple of questions for you at the end Madeline if that’s okay and then when you’re done we’re going to ask all of the panelists, but I’m going to have a few questions for you specifically so if you’re hanging out in the chat and you’re in this live call right – now get your questions ready for Madeline, get your questions ready for Michael, for Mimi, and for Dana because we’re going to start this right after she speaks. Madeline, thank you so much for joining us.

Madeline:

Perfect. Thank you so much Hadiyah. Hello everyone, thank you for being here today. My name is Madeline Handy. I am an Outreach Specialist with CalABLE which is a financial program for children and adults with disabilities. We can go to the next slide please. So the ABLE part of Calable stands for achieving a better life experience and this is part of the ABLE act which is a federal law that was signed in 2014 that allowed states to open these tax advantage savings and investment accounts for people with disabilities and so CalABLE is California’s version of the ABLE act and one of the key benefits of a CalABLE account is that it helps people save for the future while allowing them to still have eligibility for benefits like SSI, SSI medical and Section 8 housing. So we can go to the next slide please… So who is eligible for Calable? Well our eligibility is really simple – you can open account at any age as long as you have a disability that began prior to age 26 so again this doesn’t mean that you have to be younger than age 26 – they can actually be any age and open a Cal ABLE account, it’s just that the onset of the disability has to become prior to age 26 and then if somebody is receiving SSI or SSDI they’re automatically eligible for a CalABLE account, but they don’t have to be receiving benefits. We actually have a self-certification process. We do recommend having a signed letter from a qualified physician that basically just says that you’re eligible, but you don’t need to turn that into us. It is a self-certification and so more information about eligibility can be found on our website. So we’ll go to the next slide please… So like I mentioned, one of the key benefits of a CalABLE account is that CalABLE protects benefits – so for those who are on SSI, you’re probably aware that you can’t have more than $2,000 in a bank account, otherwise your benefits may be at risk of being suspended and so $2,000 – that’s not a lot of money – you can’t save for anything with that limit. You can’t have your financial dreams come true and so with a CalABLE account the really amazing thing is that you’re able to save up to $100,000 directly in a CalABLE account without impacting SSI and so CalABLE allows you to save money and still maintain eligibility for SSI CalFresh, Section 8 and then also SSDI and medical as well. Another really fantastic thing is that friends and family can contribute directly to a CalABLE account and it won’t be counted as income by benefits programs so this is a really great way for friends and family who want to help, but not hurt and count against benefits. Next slide please… and so CalABLE it’s not just savings so even if you’re not on benefits there still is a great reason to open a CalABLE account and that’s because CalABLE is a tax-free investment account and so with CalABLE we have professionally managed investment portfolios that allow people to save for items and experiences that can improve their life so it’s also a long-term vehicle to invest for the future and on this slide I have a quote from one of our CalABLE ambassadors – Otto, he’s an individual with autism and so he said “I am still very young that is the perfect time to start investing.” CalABLE has given me that tool to be able to invest in my future just like everyone else and so that’s the really great thing about CalABLE is that it really allows people to think about saving, but then also for the long term. Next slide please… thank you… so what can you actually spend the money in a CalABLE account on and so we call these qualified disability expenses sounds like a really long name and really technical, but really it’s any expense that helps the account holder maintain or improve their health their independence or their quality of life and so that’s the definition of a qualified disability expense. On this slide are just some examples of potential qualified disability expenses, but this is not an exhaustive list by any means so these would be things like education housing expenses, transportation, and travel, basic needs including food, even vacations could be considered a qualified expense – essentially as long as the expense would improve or maintain health independence or quality of life you can take the money out and it won’t count against benefits and it will also be tax-free. Next slide please… so for example a service dog – so on this slide we have Henrietta which is actually our Executive Director – Thomas Martin he is an individual with autism and his children also have autism as well and so Henrietta is his son’s service dog and we also have Valerie and Cleo so Valerie is one of our Ambassadors and Cleo is her service dog so thinking of a service dog with a CalABLE account you could spend the money to go get a service dog, but CalABLE can also help with expenses of having a service dog – so vet bills, food for having the service dog, equipment, any additional training – so CalABLE is really great. It really allows you to spend the money on the things that can help you improve your life… Next slide please… so to get started at CalABLE this is all done through our website which is calable.ca.gov so you’ll go there and then you can click on the yellow open an account button, takes about 15 minutes to get started the account can actually be opened by the person with the disability – if they are able to or the account can be opened by somebody else on their behalf so in many cases this would be the parent, but it could also be a grandparent, a sibling, a guardian, a conservator, even a rep payee can open a CalABLE account on somebody’s behalf. And so that authorized legal representative is what they’re called – they would manage the account they would be the one with the username and password who would be making the decision on the account, but I will mention with CalABLE one really great thing is that we do have a prepaid card – so if there is an authorized legal representative they can actually order a prepaid card for the individual with a disability and you can set some spending controls on that – some limits as well and this is a reloadable prepaid card which is really great for somebody who is learning how to budget. For example, because you could load maybe $50 to $100 onto this card and they can actually practice spending their money anywhere that Visa is accepted… Next slide please… so if you need any help opening your Calable account or you have any questions or you need help getting that prepaid card you can always give our customer service center a call at 833 CalABLE that’s also 8332252253 and they are open between 6 a.m and 5:00 p.m pacific Monday through Friday… Next slide please… so why choose CalABLE? CalABLE really allows people with disabilities to plan and save for the future with CalABLE you can save money and still have your benefits protected and friends and family can also contribute to a CalABLE account without impacting benefits and then your money can also grow tax-free so it is an investment device as well and then you can spend your money on items and experiences that make your life better at any time without taxes or penalties so it is a very flexible investment device as well and then you also become part of the CalABLE community. So we are on social media, we’re on YouTube – we have recordings of past webinars so if you want more information that I just provided in this short little spiel, you can go and listen to one of our webinars on our YouTube channel as well… Next slide please… so I really want to encourage everyone you know – open account now and get ready for a lifetime of opportunity the sooner you start, the sooner you can start saving and planning for the future… Next slide please… and then just as a little bonus for being here today CalABLE is offering when you open your account, you do have to put $25 in but that’s not a fee that is just to get started so if you go and open your account and put $25 in and then use the promo code CA Zoom we’ll give you an additional $50 in your CalABLE account to get you started so really want to encourage everybody to do that you know as soon as you’re ready to… Next slide please… and so thank you very much for having me here today. I am happy to take questions, thank you so much. 

Hadiyah:

And Madeline, I I guess I’ll start since you’re open to it – I guess I’ll start with this question for you – what are some of the most common questions or concerns families have when they’re first learning about a CalABLE? What’s one of the most common questions?

Madeline:

I would say one of the most common questions is probably – what happens when a CalABLE participant passes away? That is one of the most common questions we receive a lot of people are worried about medical clawbacks in a CalABLE account and so with CalABLE, CalABLE accounts are protected from medical clawbacks and so with CalABLE – when somebody passes away, the executive of the estate would submit the death of beneficiary form to CalABLE and then the account can actually be used for any outstanding qualified expenses so for example funeral and burial expenses would be one of them and then the money goes to the estate so you know we recommend talking to an estate planner to make sure everything’s set up properly, but the money doesn’t go back to the state that’s definitely one of the questions that we receive a lot so it really you know empowers people to use their money – how they want it to be spent. 

Hadiyah:

That’s good to know – I actually happen to know an estate planner that joined us today. So we’ll see if we can ask him more pertinent questions. That being said, thank you so much for jumping on and being willing to do this presentation. I do want to open up the floor for more questions. Of course I always have a lot of questions – I’m a very curious person, but I want to ask your questions if you’re live here with us — if not I’ll continue down the line of questioning that we have, but my biggest thanks to all the panelists. All that they shared and a lot of what’s been talked about is being financially responsible in a way that supports and cares for your loved one with I/DD… Just circling back on that – there’s one person on our panel in particular who has a unique position as they’re both a leader at an organization that provides services for I/DD as well as a parent – Dana this question is for you, it says ‘as both a leader of LSA and also a parent of a child with I/DD, what do you think families often overlook or underestimate when it comes to long-term financial planning? What role do you see organizations like LSA playing and helping families prepare financially for housing and care needs across a lifetime? What are things that families overlook for long-term financial planning?

Dana:

Well I mean that’s a good question… I think Mimi hinted at the fact that in this process there’s often a lot of unanticipated costs and I mean heaven help you if you decide to fight the regional center or you know fight the school district and in fact her comments brought back some amazing memories – I have of some really good knockdown dragout fights so I would say that you know when you’re looking for that placement you also want to know want to consider – the fact that you’d like to minimize those unanticipated costs and I like to think one of the things that the model that LSA uses is the closest thing to a full service model. Everything’s included and also in theory everything is paid for you know by the regional center – by the state, through the regional center system so you know anticipating what you know, what might be some of those costs that might be unanticipated and secondly maybe taking advantage of the CalABLE or special needs trust or in my case I didn’t realize it at the time but my mother had vision and she could see these things and so she wanted you know to fund if there was a CalABLE account she would have funded a special needs trust. So u taking advantage of these mechanisms to save for the future and we all could save more, but I mean these are pretty good mechanisms that can be put in place and to help deal with those things that aren’t foreseen. 

Hadiyah:

Thank you so much for sharing that and pointing that out. I was just going to ask my next question which is – what role do you see organizations like LSA play in helping families prepare for financial housing and care needs across a lifetime?

Dana:

Well I mean you know it’s a tough one right – we try and do our part and our part is trying to create more capacity… certainly putting a program in place that’s comprehensive and high quality. One of the kind of unseen things is that we we try and put aside donations so that we can take care of some of those things when they come up – when somebody who lives at one of our homes, needs or wants something that that isn’t necessarily easily provided by their family so I guess we try and create that stability and and build capacity so more people, more families can rest assured that their loved ones in a place that hopefully will be a forever home – right?

Hadiyah:
I’m going to jump in and underscore the need to make sure that LSA is funded– it exists when we do our estate planning. We always recommend charitable giving when people do their estate planning so that’s essential to LSA’s future – part of the answer to the question – trusting that money to an organization that will you know, as I might say, will will carry that torch on. I would have to agree – I think something that we didn’t say even in the last one and I am going to say it in this particular webinar is that Life Services Alternatives – we are a nonprofit and so, it’s at no additional cost to families. If your son, daughter, loved one is right for a placement in one of our homes – this is at no additional cost so it comes out of the SSI medical and the support that they’re already receiving through regional center and we receive that as kind of a reimbursement, but we’re not in the business of trying to make an exorbitant amount of money in order to thrive – that being said I think there’s a few questions that have come in and I want to make sure that I that I hit all of them in order… Michael, this one’s for you since you’re up – it says “For families who may feel overwhelmed or unsure where to begin – what’s the first legal or financial step that they should take?” 

Michael:

Well the easiest is to talk. It doesn’t have to be just us – there’s other attorneys who understand this world, but I mean it’s talking with somebody who knows what they’re doing –- who’s been around the block… understands how CalABLE accounts fit with special needs planning… understanding the limits you can up to …$19,000 a year by the way can go into a CalABLE account so knowing how much can go in, how to manage it and there are webinars and there are videos – again LSA has some, we have some, there are many other resources like that so you got to get grounded, but if you’re going to take care of it you should sit down with somebody who knows what they’re doing. Tackle the planning and get it done. 

Hadiyah:

Thank you so much Michael. I’m gonna move back to Mimi for one more question then we’re going to go over to you Madeline because there’s a couple of questions that are coming in for both you and Michael. Mimi, what was one of the biggest financial lessons that you learned while planning for Morgan’s future?

Mimi:

I would think of saving as much as you can for their future because you never know what’s going to happen and it’s a good great opportunity for your child or loved one to have finances – to finance what they really do need and what can really improve their lives. 

Hadiyah:

One thing that I’ve heard you say Mimi, that is that you were open and I think that’s what a lot of what Michael and Madeline have kind of been suggesting is you’re open and to me it sounds like you let Morgan do a lot of the driving and you did a lot of listening to what she needed in a way that government couldn’t do, the school couldn’t do, that only someone who loved and cared for Morgan could – is that right?

Mimi:

Absolutely every parent knows their child best. We live with them, we know them more than anybody else and we know what they need so that’s awesome listening to your child and what they want.

Hadiyah:

That’s awesome – thank you so much for sharing Mimi. I’m going to move back to you Madeline for a second if that’s okay. Someone anonymously asks for CalABLE if $100,000 is the limit – does that mean any investment gains will have to be spent to keep the account limit at 100K?

Madeline:

Yes – so there are a couple of different limits you’ll want to keep in mind with CalABLE so we do have an annual contribution limit like Michael mentioned that is $19,000 for this year so it will take you a bit of time to get up to that $100,000 limit and so that’s if you’re receiving SSI so once you start to approach that you will want to take money out to spend on those qualified expenses and then you can add money back in so that 100,000 includes contributions and then also any investment earnings as well if somebody’s not receiving SSI they can actually save up to $529,000 in a CalABLE account but again with that $19,000 annual contribution limit it will take a bit of time so if you’re looking at a larger amount of money that you need to put in immediately we would recommend a special needs trust in that case and special needs trust and CalABLE accounts can actually work really well together. Usually we see people with a larger amount of money putting it into the special needs trust and then transferring to a CalABLE account for more flexible spending – that’s usually how they interact.

Hadiyah:

That’s awesome – thank you so much for sharing Madeline. I’m gonna move back to you Michael – someone says that you’re trying to squeeze too much into the 10 minutes that we gave you – over two hours worth of content that you had – we also by the way have put Michael Gilfick’s YouTube channel in the chat. So if you’re live and you want to check that out we highly encourage you to do so. Another one of the reasons why we do this type of programming is to give back to you, even if we are not the right place – if we’re not the only resource, which we don’t want to be – that you’d be able to find other resources. This is the question though Michael… the person said “What about keeping the property in the family if a special needs member is living in it – they didn’t follow, can you explain a little bit more about that?” 

Michael:

Sure – so we all love Prop 13, which was from the 70s and other developments that were very protective of the house until Prop 19 which became law a couple of years ago. You could pass along your house and usually one or two other properties to your kids – no property tax increase. Prop 19 changed that and hardly anybody knows about it so let’s say – first of all your child is living in a property you own, but it’s not your residence… they live in a property a vacation house, the duplex whatever okay… when you pass away the property’s going to be reassessed… if that property is worth 3 million, property taxes go up to $34,000 a year – that’s usually about a $25,000 per year increase. Most people can’t afford it – if it is your residence and your child is living in it, that’s the only partial exception. If your child makes your residence, her residence and fills out the forms properly – the first $1 million in reassessment is forgiven. Only 1 million around here we can say only 1 million, okay so if the property is worth 3 million the new assessed value would be 2 million. Take off a million and the property taxes still go up dramatically to about $23,000 a year. So if you go over 101, 15 years you’re talking like a quarter of a million dollars in extra money that’s needed just to pay the property taxes and that’s why it’s the realtor’s delight – that’s why so many people are compelled to sell because they don’t have enough money to satisfy the property taxes so if there is a desire to keep your residence or another property in the family for your child special needs or not, but especially special needs you got to learn about the options there are steps that can be taken to avoid the property tax increase that can make the key difference in allowing you to keep that property for your child.

Hadiyah:

Thank you so much Michael and that is all our time for today we are exactly at 4:00PM. We do have one more special message, but before I go to our last speaker and our partnership for affordable housing month with SV@Home — I want to thank all of our panelists. Thank you so much Mimi and Dana and Madeline and Michael for joining us today and being able to talk about this important topic, which we didn’t have enough time for. If you did enjoy this message, be sure to join us for Friday where we’re talking about navigating the regional center system — a parents roadmap to housing and support and this particular panel, this particular video is going to be up on YouTube shortly after this talk. Send it to a  friend, send it to somebody who wasn’t able to make it. Send it to your entire network — we want to point you in the right direction and we want to help you and your friends and if you are interested in having more fun with us in person we are going to have a race — LSA’s Run Home. It’s our fifth annual Run Home happening on the 6th in Los Gatos from 9 to 12:00 p.m. The QR code on the screen — feel free to scan it and join us. We would love to see you run, walk or just cheer along on the sidelines. We’re going to continue to raise money for this great organization and we’d love to keep the conversation going with you on all of our socials. Please do check us out online and if you have more questions or you’re interested in one of LSA’s homes — sign up for our family interest list — we’ve put that link in the chat. It’s also available at lsaomes.org that’s ww.lsahomes.org. I’d like to thank everyone who’s joined us again. Thank you to all of our distinguished panelists as well as all of those who’ve joined us live for this recording and those who are listening right now on YouTube. We have one more special guest which is Cesia — she’s joined us from SV@Home. She’s going to be sharing with us a little bit more about resources. 

Cesia: 

Thank you yeah, so hello everyone my name is Cesia and I work at SV@Home. SV@Home is thrilled to partner with LSA for affordable housing month — a time to come together, learn and take action and this year’s theme is strengthen housing. It’s a powerful reminder that we unite across sectors and communities l and we can strengthen our collective commitment to housing justice and drive lasting change. At SV@Home, we learn, we lead this change through policy advocacy leadership development coalition building and by amplifying the voices of those most impacted by the housing crisis we are aligned with LSA in our shared commitment to ensuring that everyone in our community has access to safe stable and affordable housing the webinar series hosted by LSA provides a critical space to consider one of the most important shifts in housing development today inclusive design designing affordable housing for all abilities is not an exception it’s necessary in Santa Clara County affordable housing developments like the Kelsey Mitchell Park Place and 1585 studios reflect this shift these affordable housing developments accommodate the needs of individuals with intellectual and developmental disabilities while benefiting entire communities through universal design enhanced accessibility and shared community spaces that foster connection independence and belonging these affordable housing developments were conceptualized by embracing a design philosophy prioritizing people of all abilities informed by a real world experience and shaped through community collaboration. One of the critical challenges for affordable housing development is the availability of limited state funding the low income housing tax credit program a primary funding source for affordable housing is highly competitive and overs subscribed, however the good news is that affordable housing developments that dedicate units to individuals with shared needs receive additional points making it likely for these developments to receive state funding this creates a critical opportunity we can leverage these incentives to advance inclusive affordable housing when we collectively advocate for it we are excited to be a part of this growing movement learning from each other lifting up lived experience and taking meaningful steps toward a future where housing is a right and not a privilege. To learn more about SV@Home and  what we’re working to make this vision a reality please visit our website silicon valleyatome.org and thank you so much for giving us this opportunity.

Hadiyah:

Thank you so much Cesia — it’s been great partnering with all of you who’ve come on to this panel. If you are joining us for our Friday panel we’ll see you then, but until then thank you so much for joining us tonight and see you next time. Thank you everybody! Bye- bye!