Featuring: Dana Hooper – LSA’s Executive Director, Lilian Piruzan Ansari – Parent and Disability Advocate, & Melissa Crisp-Cooper – Associate Director of Participant Experience at The Arc San Francisco, Health Advocate & Self-Advocate

Leila Elabed: ​​Hello everyone. Welcome to 2025 I/DD Topics and Trends. Thank you all for coming out tonight for an amazing webinar. It looks like people are still joining us so we’ll wait a few minutes to let everyone settle in. This is our fourth installment this year, so if you want to go ahead and head over to our YouTube channel after this and view the other three, we had three other amazing experts in the I/DD field do webinars earlier this month, so you can go ahead and head over there. But it’s also our fourth year doing it. So, we also have four other or three other years of IDD Topics and Trends. If you’re looking for resources or experts in the community, please go head over there. So, tonight we have demystifying self-determination, practical conversations for families, and we have Lilliansari and Melissa Crisp Cooper with us tonight. 

For those of you who are new to Zoom, you are currently muted for this event. If you have any questions, you can go ahead and use the chat function to interact with us and with each other. If you’re looking for a community, please chat to the other attendees as well. You can switch from all panelists to all panelists and attendees and go ahead and do that. 

Before we get started, I wanted to hear from you guys. So I will go ahead and run a quick poll. It has about three questions. We want to know how you heard about us, as well as what is your relationship to someone with I/DD? And then what is your biggest concern when it comes to future housing and care planning for your loved one with I/DD? Go ahead and answer those questions. I will give it about a minute. These questions help to inform us of the next topics that we’ll be covering next year. We’ll have another four to five experts coming in next year for this webinar series. It happens in July on Tuesdays. So if you’re interested in that, please check back next year as well. Just give it a few more seconds. If you haven’t already, please answer that poll. Okay, thank you all so much. It’s great hearing from you guys. Last but not least, at the end of this webinar, the last 15-30 minutes, there will be a Q&A section. So that is open for all audience members to ask questions to our panelists and please go ahead and drop them in the Q&A function at any point within the webinar. Okay, thank you all for participating in our polls. 

To start us off today, I’d like to introduce our executive director since 2007, Dana Hooper. Dana Hooper has been the executive director of Life Services Alternatives for the past 17 years, but his journey started many years ago when his son Brent was diagnosed with an intellectual disability. Over the years, he has become involved in many areas of the I/DD world. He became a leader in our community working with government and nonprofits such as branch services where he was part of the board, Lighthouse of the Blind and Visually Impaired where he was part of the board, the state department of developmental services, and the San Andreas regional center where he was also part of the board and where his son Brent is a client in supported living. It also led him to his leadership role at LSA where he can make a difference every day in the lives of the individuals that LSA serves. 

Dana Hooper: Thank you, Leila. It’s really a pleasure to be here tonight, and I would like to take a couple minutes to introduce our two guests. We’re really super, super pleased and excited that they’re here today. The first is Melissa Crisp-Cooper who is a writer, an adventure seeker, a health advocate. She currently serves as the associate director of participant experience at the Ark of San Francisco. She has cerebral palsy and uses a purple power wheelchair to navigate the world. She also brings a strong voice for numerous disability related advocacy boards and committees. At home in Oakland, she and her husband Owen share their lives with two very opinionated black cats–got to love that, I have two very strong willed dogs. In their free time, they enjoy traveling, good food, and attending adaptive yoga together. Also joining us is Lillian.  Lillian is a parent of two children with disabilities and a passionate advocate for inclusion. For nearly 20 years, she has worked and volunteered with nonprofits and public schools, championing the rights of children with disabilities at the local, state, and federal levels. She is currently a program manager at Family Resource Navigators, that’s a mouthful, and holds a master’s degree in counseling. Originally from Iran, she now lives in Northern California with her family and continues her lifelong commitment to building more supportive and accessible communities. Welcome, Lillian.

Lilian Ansari: Thank you, Dana. Great to be here. 

Dana Hooper: Super. The format is a little more complicated tonight because I’m going to interview both Melissa and Lillian and the format is I get to ask the questions and they get to share their answers with you. Once we finish this section of tonight, then we’ll go to a general Q&A and if you ask questions in the chat, they will be presented to us to answer. But in the meantime, I’d like to get started. And I’d like to start with Lillian. I’m guessing some of you are new to this concept of self-determination, actually not to self-determination, we all hope to determine ourselves but in this case it’s a self-determination program that’s offered through DDS here in the state of California. I’m hoping that, Lilian, and you could maybe give us a little bit of an overview of what the program is and why it’s important to people with disabilities and their families. 

Lilian Ansari: Sure. So, the self-determination program is a fairly new option for any consumer, any client of the 21 regional centers in California. Anyone over the age of three that is a client of the regional center is eligible to apply for this voluntary program. It can be complex but kind of like the simplest way I can put it is that it’s another option to receive services besides the traditional model and it puts the individuals and families more in control of how the funds are spent. It just kind of gives them more freedom, more control, and more options, and a lot more flexibility on how the funds are spent.

Dana Hooper: Okay. I guess I’m used to what you’re referring to as a traditional model. My son lives with a couple of roommates and he gets support through supported living and we feel pretty good about it. Maybe you could elaborate a little bit on those differences. If that was the right thing, if you were in self-determination and the right thing was to get some supported living, how would it differ? 

Lilian Ansari: I have a 16-year-old and a 20-year-old that have been part of the self-determination program going into the fifth year now. So we started when it was being piloted for Regional Center of East Bay which is what we were a part of at that time. The reason I chose SDP or self-determination program for my daughter was that I was having a really hard time finding respite providers. When we were, we had to sign up with the respite agency and we had to kind of either find our own people and have them sign up with the respite agency or hire people that already were employed by the respite agency. The pay was kind of on the lower side. It was pretty much minimum wage and it was really hard to find staffing. And so the reason I chose self-determination initially for my daughter was to be able to hire my own person and pay them what I wanted to pay them and have the flexibility of having them drive my child or do other things that sometimes the respite agency wasn’t allowing them to do. So, we pay them a lot higher wage than the respite agency was paying them. It was just a lot more flexible the types of tasks I could have them perform with us in the family. So, that’s kind of an example, but there’s so many different things. 

Let’s say, my son who’s older, needed a laptop for researching things or for communication for various reasons. He needed noise cancelling headphones. My daughter needed an Apple Watch because she has seizures and we use that as a seizure monitor for her. Those were things that we couldn’t fund under the traditional model. Even though there were things that were directly benefiting her, self-determination helps you find a way to justify paying for those things. You still have to abide by the rules of Regional Center being the payer of last resort, so if your insurance will pay for a service or a product or if you have CCS or if your school district will pay for it, Regional Center won’t pay for it. For something like a laptop and headphones and Apple Watch, those were not things that would be paid for by anybody else that we were able to fund through self-determination. Personal training for my son who has sensory processing disorder, that was something that we were able to fund through self-determination and so many other things. You still have to connect whatever service you get through the individual’s IPP and it still has to fit in within the parameters of what DDS will pay for, but there’s a lot more wiggle room on what they will pay for. 

Dana Hooper: Wow, that’s quite helpful and I’m sure we’ll get at that in other ways. Can we maybe shift gears, Melissa? Can you tell us a bit about yourself and what led you to explore

self-determination program for yourself?

Melissa Crisp-Cooper: I first learned about STP in the summer of 2018. It seemed like the program was designed for me. I was unhappy with the lack of choice and control I had with my supported living services SLS agency. The staff who helped me at home were underpaid, unreliable, and often unwilling to let me control my services. Before my SLS was transferred to this agency, I had a lovely person-centered agency that understood how I wanted to be supported. So, I knew there was a better way to get the support I needed to live life on my own terms. I quickly became active in the self-determination local advisory committee for RCEB. My goal was to help shape the new program to be as person- centered and userfriendly as possible. Later that year, I was selected as one of the participants in the statewide pilot program. I was one of the guinea pigs who helped to work out the initial kinks in the program. There were so many dang kinks. It took me a year and a half to transition from traditional services into SDP.

Dana Hooper: Wow. Thank you. Back to Lilian and, maybe could you share your personal connection to self-determination and maybe talk a little bit about how it’s impacted your family? 

Lilian Ansari: I think I alluded to it a little bit already. So, I have a 16-year-old daughter with disabilities as well as a 20-year-old. They’re both impacted very differently. My daughter has a condition called Tuberous Sclerosis Complex. She has developmental delays and epilepsy and autism, and my son has autism, dyspraxia which is a motor coordination disorder, anxiety and learning disabilities, a few other things. And even though they have very different needs and they have different abilities that are impacted by their disabilities very differently, they’ve both been able to benefit from the program. Honestly, it’s been sort of a game changer for us. They’ve both been able to get services that they were not able to get under the traditional model. And it’s benefited our family. It’s it’s definitely been more work for me, but we can talk later about sort of ways to kind of simplify things and get the support

Dana Hooper: Great. Melissa, can you talk a little bit about how you use SDP and how do you work with your independent facilitator? I understand there’s an independent facilitator involved in the program. So how do you work with it to make it all happen?

Melissa Crisp-Cooper: In STP, I have control over who I hire and how much they are paid. Of course, their pay rate is determined by my budget and the amount allocated in my spending plan, but I try to pay them a fair wage. Hiring the right person can be difficult and time-consuming. The interviewing and onboarding process can be complex. I post an ad, interview potential candidates, select a candidate, wait for their background check to clear, help them through the financial management service, FMS, logistics, then train the new attendant. This process often takes two to three months. I have started asking potential candidates for at least a six-month commitment. I can pay for other things that make a positive difference in my life as well. For example, I allocated funds in my spending plan to help make our home more accessible. I set aside some funds to pay for part of the ramp to our house. I hired a handy person to help us maintain our home. SDP helps me pay for different forms of transportation so I can get to work and access the community. I used some of my funds to pay for the conversion on our accessible van who we named, Van Gogh Go. SDP also pays for some Uber rides so I can safely get to and from work in bad weather or at night. My funding pays for things that help keep me healthy like adaptive yoga classes sponsored by Piedmont Yoga Community and a massage therapist. I am responsible for finding all these products and services and setting them up with my FMS. I have an independent facilitator who is more than willing to help me with these things, but I sometimes find it easier to communicate directly with my FMS manager. I am lucky that Owen understands the system. He often helps me navigate the hurdles. 

My FMS has become much less user friendly and more bureaucratic over time. When I first started the program, I could simply email my FMS manager and ask for what I needed. Now, there is a specific form for every request. Half the time the form is filled out wrong, so that means many emails with my FMS manager. Between approving time sheets for my attendance, submitting invoices for my vendors, and completing FMS request forms, I probably spend 4 to 8 hours a month on my SDP services. Late last year, my FMS stopped providing the co-employer model. They transitioned to the sole employer model, which means that I am now the employer of record. This transition involved lots of time and paperwork. My FMS still handles payroll and taxes related to this employment relationship, but I am responsible for everything else. Many FMS agencies have decided to only offer this sole employer model. If you decide to go into SDP, make sure you understand what models your FMS will offer and what services they provide. In May, I started my fifth year in SDP. Transitions between years are tricky and require months of planning. I must decide what will go into my spending plan for the year. My independent facilitator helps me allocate the money and plug everything into the spending plan. There is lots of back and forth between my CEB case manager and SDP specialist, my IF, and me. I absolutely could not do this part without an IF.

Dana Hooper: Thank you, Melissa. Lillian, you’ve kind of alluded to some of these but what are the biggest challenges and misconceptions that you’ve seen or encountered when a family starts getting involved with starting this self-determination program. 

Lilian Ansari: Similar to what Melissa was talking about, the first three years that my children had self-determination, I navigated it on my own and it was challenging. I was spending a lot of time kind of going back and forth. I also had a financial management service, an FMS, that was not very user friendly. So, it took a lot of back and forth to kind of manage that. The fourth year I hired a good FMS that has been very, very helpful. So I would highly recommend that and the cost of paying for the independent facilitator comes out of your budget, so you don’t have to pay for it out of pocket. So just going back a little bit, talking about the good stuff again and then talking about the challenges. Some of the other things that we’ve been able to pay for to address some of the challenges are paying for a parent coach, paying for an advocate. We’ve been able to get, like Melissa said, Uber rides because my children can’t drive. Uber rides to kind of promote my children’s independence. Because my son has a motor coordination disorder, he can’t cut his own nails or wash his own hair properly, so he goes to the hair and nail salon once a month for grooming. He has someone that helps him with cleaning his apartment. Things like that we were able to fund. It’s taken a lot of work, I won’t lie. So, it does have an administrative burden on the family and Melissa and is one of the very few self- advocates I know that is able to navigate and understand this process. Neither of my children can understand or aren’t able to navigate this. So it’s called self-determination but really the self advocate is in most cases not able to advocate, so somebody else, a family or somebody, needs to help them navigate. 

Another challenge we’ve had is that there are always new changes and directives from the Department of Developmental Services, DDS, that you have to kind of keep up. The first year we participated in self-determination, they were paying for almost anything I asked for. And then the second year and the third year, subsequent years, became more and more restricted and the rules kind of keep changing. If you don’t have a good independent facilitator and if you don’t have a good FMS, it can make the process a lot harder. So yeah, just keeping up with all the changes in information has also kind of been challenging, but weighing the pros and cons and figuring out if it’s worth it–it’s been worth it for us so far.

Dana Hooper: Well, fantastic. Let me ask a little different kind of question. We talk often about person-centeredness and making sure that we’re respecting what the individual wants–not necessarily what mom wants. Although, those two can be synonymous. How do you include your children? How do you get their input and include their autonomy in this process?

Lilian Ansari: So, again, this is some place where I think a good independent facilitator would be able to help. One of the first steps of signing up and getting started with self-determination is to put together a person-centered plan. So, a good independent facilitator can help put together a person-centered plan and really anyone, even a person that communicates with a yes and no switch, can provide input on what they want and what they don’t want. A good independent facilitator can kind of help get that information from the person if it’s not from them directly, but from a group of support people. So we have almost like a board of directors, like an advisory committee for my children that consists of nine different people of friends and family that know my children really really well. And when we’re making bigger decisions about what they have going on in their lives, we consult the advisory committee and we always include our kids in the process and they all sort of provide input for putting the person-entered plan together and it’s like a presentation. A lot of times, it’s basically like a PowerPoint presentation where it talks about what they like, what they don’t like, what their hopes and dreams are, what helps, what doesn’t help, how to communicate, what are the challenges–they put all of that together. It’s a really cool document. If it’s well done, it’s a really great way to present it to new providers, new teachers, new therapists that are working with my children. That kind of tells a story about who they are, what they like, what they don’t like. So just got to really be thoughtful and do your research and talk not just to mom but to other people that are involved in my children’s lives about what they see as far as what helps, how to face challenges, how to get their input on what they like and how to support them. So using all their resources and the source of information we have around us to put a story together and to get their input as much as possible. I have one child that is more able to really verbalize what he wants and he doesn’t want. He’s very clear about what providers he wants to work with, what he doesn’t. I have another one that’s really not always able to verbalize what she wants. So, it’s a little bit harder to get input from her and get information from her, but I think that you can. You can get input from anyone if you take the time and use the right communication methods. 

Dana Hooper: Fantastic answer. Thank you. Always a challenge to tease that stuff out. I know in my case, we’ve learned over the years that there’s many cases of “no” that my son means “yes”. So there’s a whole bunch of different versions of “no”, and so how do you tease out the ones that are actually “yes”. Melissa, in your experience, you’ve used both. You’ve used the traditional model, supported living. And you’ve also used the self-determination program. What do you feel the differences are now that you’ve made the switch

Melissa Crisp-Cooper: Yes, being an STP takes time organization and patience but I love having more control over my services than I had under the traditional service model. I like choosing who supports me. These people are crucial to my independence and quality of life. Paying them fair wages is important to me. I typed this presentation on a high digestible desk that I purchased with SDP funds. I will use this desk for countless writing projects. In SDP, I can dream up so many creative ways to enhance my life. I could not imagine going back to traditional services.

Dana Hooper: Fantastic. Lillian, I guess a follow-up, what’s one simple actionable first step that you’d recommend that they take to go down that self-determination program path?

Lilian Ansari: I think with just like a lot of other situations, parents of children with disabilities connecting with other families who are a few years ahead of you in the process that have kind of done it. I think talking to other families can be really useful about their personal experiences and just staying informed. Attending meetings like this and talking to others that are navigating the system. There is a lot of support out there. There are the local advisory committees for each regional center and you don’t have to actually become a member, you can attend their open public meetings and listen. So just really staying informed and connecting to other families would be where I would start because let’s say the very first step, if you’re interested in exploring or signing up for self-determination is an orientation. So you sign up, you go to your regional center’s website and they all should have a self-determination tab. Just click on it and sign up. Or if you can’t find it, call your regional center service coordinator, case manager, and let them know you’re interested in signing up for an orientation. You attend the orientation, and most people I know still leave the orientation not knowing what this is. So, don’t be discouraged because just think of it as, okay, I checked off the first step in starting the process and don’t be discouraged. Don’t think that that’s where you’re going to walk away knowing what you’re supposed to do–no, not really. The way you really know what you’re supposed to do is by talking to other families and by having a good independent facilitator that can break it down for you and walk you through it. So, don’t be discouraged if you attend the orientation.

Dana Hooper: Okay. All right. Well, that’s great advice. So, again, Melissa, looking back, you’ve been through this process, right? And I think you mentioned some of the benefits, but just maybe elaborate a little bit about the benefits that you’ve discovered and what the biggest challenges have been.

Melissa Crisp-Cooper: I am now entering my fifth year in STP. There are so many things I love about this program, yet the pros are often intertwined with the cons. It is true that with more choice and control comes more responsibility and a lot more work. When I used traditional services, almost my entire budget paid for my supported living services. Traditional services basically paid the wages of my attendance and a staff supervisor plus the administrative costs of the SLS agency. Now in SDP, there are no supervisor or agency costs. There is no supervisor to help manage my attendance or approve time sheets so they get paid. Yet, I have more control over how and when I get support. I can also pay my attendants a higher wage and I have much more flexibility over how I use my remaining funds.

Dana Hooper: Great. I have one more question and I guess this one’s a little bit more personal because, well, at LSA, we provide a number of standard programs and services, including a day program and we often get asked, “Oh, I’m in self-determination. I’d like my daughter to be in your day program. How does that work?” And I guess we’ve always just answered, we have a standard program and if you like it well that would be amazing and we have a standard rate. It’s the rate that the state of California pays us. And trust me, they don’t always give us a fair and equitable wage to be able to pass on to the people. But if you’re up for it, you can access our program through self-determination. So, it seems to work that way. So I guess my question is being in self-determination does not prevent you from accessing and using standard services where they make sense–it just allows you to go way beyond and essentially customize your own services to meet your own specific special important needs. So, that’s kind of my analysis of it. Am I looking at it correctly? 

Lilian Ansari: Yeah, exactly. I think it could be a lot more customized and individualized. For instance, my son is in a day program that on its own, it would not provide enough support for him in order to succeed in that program. But because we’ve added the additional services, for example, the house cleaning and the hygiene support, an additional social skills coach, nutritional counseling–those are things that are needed for him, in addition to what the day program provides for him to be successful in the program. It’s not something that we would be able to provide for him under the traditional model. So it’s really a lot more individualized and a lot more flexible. So if a family is all they want to do is attend a day program, then no, this would not be something, and if that’s enough for them or if their children are in a group living situation and the services that that the place provides is enough for them then, no, this would not be a suitable program for them. But if they want additional services or more individualized services, then this would be the way to go.

Dana Hooper: Excellent, and I could see where supplemental or wraparound services might make a whole bit of difference in terms of someone’s success in a day program. So that kind of opens up the perspective. I think we’re pretty much back to that point where we’ve gone through all of the questions and so I will hand it back over to Leila and put myself on mute because my wife just came home and the dogs are excited. 

Leila Elabed: Okay, that was amazing. Thank you all for your conversation and insights. Right now, we’ll be moving over to the Q&A section. So I just wanted to urge any attendees to put those questions in the Q&A part of Zoom. It’s all the way at the bottom of your screen. It says Q&A. Please drop any questions you may have for Melissa, Lilian, or Dana in that section. Okay. Well, that was amazing, Lilian and Melissa. The last thing I heard, it sounds like self-determination is you’re able to provide a more well-rounded supports to support the person being served. We did have a question about how can providers and regional centers better support families who want to explore the self-determination program because it sounds like it’s a lot of obstacles you have to jump through. Lillian, do you want to start?

Lilian Ansari: I mean, again, just like I was mentioning is staying informed and connecting families to the right resources, to attend different forums. If anyone’s on Facebook, there are a couple of really great Facebook groups where people can kind of lurk and ask questions of other families, providers, and families that are kind of going through the process. Just really spreading the word and letting them know this is an option to get the information out there. 

Leila Elabed: Yeah, that’s very interesting. Yeah, the independent facilitator, I think someone has a question about that, finding an independent facilitator.

Melissa Crisp-Cooper: Case managers are supposed to ask families at IPPs if they’ve heard of or if they’re interested. So that’s a good place to start.

Lilian Ansari: I think more and more a lot of service coordinators still don’t really know a lot but I think more and more they are going to and they’re supposed to ask, like Melissa said, their families if they are interested in self-determination. Providers, that’s a good place to start, please ask your service coordinator about this program. 

Leila Elabed: I see. So, it’s a lot on like the families or the person interested in the self-determination to really keep on asking and being persistent about it.

Lilian Ansari: I mean, honestly, that’s true about any service, under the traditional model or any services. It’s always kind of driven by the families usually, and speaking from my own experience, the service coordinators don’t bring you a menu of things that are available to you. It always has to be initiated by families and this is no different. 

Dana Hooper: Well, and it’s kind of notorious that service coordinators turn over a lot. I’ve had a bunch of them over the years and I refer to them as the good, the bad, and the ugly. There’s been a lot of good ones, but it’s difficult because the impression I’m getting is self-determination is more complicated. There’s more options. There’s more players in the process. And so it’s inherently going to be challenging to a new family that’s exploring it, but by connecting with support groups, maybe improving the orientation, improving the knowledge and education of service coordinators, and also the program itself I think has been tweaked over time and I’m sure some of those tweaks have been to fix flaws. Yeah, a lot of moving parts is what I’m hearing and you guys have successfully navigated them over a number of years, but the first years must have been tough.

Lilian Ansari: It definitely was a learning curve. Just when you think you know what you’re doing then there are new directives and the rules change, so you do really have to stay informed and keep up with the new changes all the time.

Leila Elabed: Yeah, it sounds very complex. I think I heard Melissa say something, she was saying about being part of the process of getting those bugs out. I’m curious, what was that like? You got to see it from the very early stages, right? How was that? I’m guessing much worse at the beginning or much more complex? 

Melissa Crisp-Cooper: It was a lot of work and the rules kept changing. It took a lot of time to wrap my mind around a whole different system, different service model.

Leila Elabed: Yeah. I mean, it sounds like that is the case still a little bit. I see that a question has come in about IF and kind of finding an independent facilitator. It looks like someone had been through the orientation and was wondering is that really the first step to blindly find one or how do you go about starting the process of finding one?

Lilian Ansari: I would like Melissa to chime in here too. For me, it was just word of mouth and asking other families. But, it’s just like hiring anyone else. You would kind of go through the list. DDS has a list of the independent facilitators. There is a list and I can’t remember what the website is but if you ask your service coordinator, they might be able to send it to you or there is a list off of the DDS website. I believe where you go through and look at the available independent facilitators. Let’s say for me it was important to hire someone that was a parent of a child with a disability. I knew that’s what I wanted. Let’s say, more comfortable working with a woman. Just like hiring anybody else. You go through the list, read their bios, look at their rates, and see what area of specialty they have. Like there are IF’s that specialize more in adult services, there are ones that focus more on medically complex kids. So, you go through and then pick who you want, you reach out to them, and some are accepting new clients, some are not. You kind of weed through them. You talk to a couple of them and see who you gel with. And like I said, just like hiring anyone else for any job, you do your research and interview them and see who you connect with. But I found mine through a friend of mine that was using an IF and been working with them pretty successfully. But word of mouth is a good way to start. 

Leila Elabed: I see. Melissa, yeah? 

Melissa Crisp-Cooper: I think there’s an IF network.

Lilian Ansari: Yes, that’s right. You’re right.

Leila Elabed: Is it on DDS? Is that where the IF network is?

Melissa Crisp-Cooper: I’m not sure how people find it. 

Leila Elabed: I see. It sounds like definitely a good place to start is DDS at least for that preliminary information. 

Melissa Crisp-Cooper: Your regional center may also have resources.

Leila Elabed: Yeah, that makes sense. Awesome. This person also continued to ask about beginning with an IF and FMS like how does that payment process kind of work? How do they work together or how can you help them to work together? 

Melissa Crisp-Cooper: Well, you start by getting your budget, which is the amount that you have to spend. And then from there, you create a spending plan and it’s the spending plan that you give to your FMS and then you work with your FMS to actually spend that money throughout the year.

Leila Elabed: I see. So the independent facilitator helps you create that spending plan or is that on you? 

Lilian Ansari: Yes. 

Leila Elabed: Oh, I see. So do you wait to pay the independent facilitator after you’ve created that spending plan or how does that work?

Lilian Ansari: So the independent facilitator is going to be one of the items on your spending plan and then the financial management service will pay them. I’m sorry, my mouse is not working but I was going to put this website on. It’s just thecasdpnetwork.org. is where there’s a list of independent facilitators and the contact information and bios are on there. For some reason I can’t access that. 

Dana Hooper: Yeah. And I think maybe the logical question and I would have as a parent, the traditional model there’s the consumer, the service provider, and the regional center–three parties. There’s a fourth party in self-determination and this is this financial management player that is actually the payer of the services, the holder of the budget. And so that’s a whole new thing. So maybe just tell folks a little bit more about how that budget gets set and who organizes the services and arranges for payment of them. 

Lilian Ansari: So the FMS is kind of like it’s think of it as an accounting service. That’s kind of mostly what they are. They have a little bit more control than accounting service. It’s a lot like the IEP process at school where the services are driven by the person-centered plan and the IPP, the individual program plan, that you have initially with your case manager with hopefully with your independent facilitator with the consumer present. And so you talk about you set the goals, you talk about the hopes and dreams and goals and then the services that are put on the budget are driven by those goals. So the tricky and a strange thing and the thing that took me a little while to understand is that when you are talking in the IP, when you’re talking about setting the budget that doesn’t necessarily, the services you put on there, don’t necessarily translate directly to the self to the spending plan. For example, under the traditional model most of us get 40 hours of respite and childcare per month. So you put that on your budget. Let’s say you put camp, all the social recreation, personal assistant, ILS, whatever services you would get under the traditional model. So they kind of give you a budget based on those needs. Once you get this pot of money and you are trying to fit it in the spending plan, then that’s where you’ll have a lot of flexibility. So, I wanted to use a lot more than 40 hours a month for child care, that’s where I have the flexibility of, if I want 40 hours a week, as long as it’s in my budget. Let’s say on my budget, I listed all the things that my daughter, my children, would normally get under the traditional model. I list everything just to beef up my budget. It doesn’t necessarily mean I’m going to use it on my spending plan. If I want to spend all my money on child care, that’s what I can do. If I want 40 hours a week of child care, that’s what I can do. So the budget and the IPP is just very bureaucratic. I know it sounds really bizarre, but what you put on your budget initially doesn’t necessarily mean you’re going to use that on this spending plan. The FMS really doesn’t have any control over this part of the process at all. They’re just the accounting service that’s going to give out the money. And there are different models, different levels of control.

There’s like a sole employer, co-employer, and I can’t remember what the other one is.

Melissa Crisp-Cooper: Bill payer. 

Lilian Ansari: Bill payer. That’s right. Let’s say for sole employer, then let’s say the person the consumer would be responsible for background checks, workman’s comp, all those things. And if you don’t want to have that much responsibility, other models are more attractive for someone like that. That doesn’t want to have that level of involvement, where the FMS then would be responsible for the background checks and the workman’s comp and the insurance and that sort of thing. So they do that, they take care of that part also. 

Leila Elabed: That’s very interesting. So then in that situation where you’re kind of sharing the responsibility with the FMS, are you paying the FMS more? Are you paying the FMS more?

Lilian Ansari: So that also comes out of the budget like nothing comes out of your pocket. Regional center pays I believe, Melissa correct me if I’m wrong, they pay for some of the initial onboarding. Things like the person-centered plan. They pay for it and that doesn’t come out of your budget, right? I think it’s $2,000 where they pay for their person? 

Melissa Crisp-Cooper: Yeah. 

Lilian Ansari: Right. So that doesn’t come out of your budget at all. But then yes, the what’s called the employee burden, depending on which model you use, I don’t want to get too much into the weeds, but then that also depends on which model you use and which FMS you use. They are all pretty similar. So, all FMS’s are kind of charging at about between 90 to 25% of what they call the employee burden, but again comes out of your budget.

Dana Hooper: What does SMS stand for? 

Lilian Ansari: FMS. Yeah, financial management service. Just like an accounting service. So, when I’m signing people up as vendors or employees, I just tell them, we’re using a payroll service. Are you willing to sign up for the payroll service? Without going into too much detail about what this is about, and most people are okay with it. You can either hire a person as an employee, depending on the model you choose, you can either hire a person as an employee or as a contractor, as a vendor. And that’s kind of one of the other advantages is that right now under the traditional model, regional centers will pay for social recreation services, but then you either have to go with a provider that’s vendorized by the regional center or you have to become the I think designated pay. I can’t remember what it’s called, but basically like becoming then you get you pay the providers and then you get reimbursed for it. But under the self-determination, you can hire whoever you want. They don’t have to be vendorized by the regional center because the vendorization process can be quite daunting and a lot of people don’t want to deal with it. But becoming a vendor for self-determination is a lot simpler. It’s usually just a docusign. You do have to have a business license in most cases unless you’re an employee. It’s very easy to sign up to become a vendor or provider for a person. That’s a huge advantage in my opinion.

Dana Hooper: Well, yeah and we’re very familiar with how fun the vendorization process is. I’m just kind of sitting here thinking. A lot of what we do is all that lifting, all the hiring, all the vetting of employees, the paying them, managing, all of those things behind the scenes. And so one of the big benefits of, if you find the right one, a vendor with a traditional service is that they do all that lifting and you don’t have to get involved. I haven’t interviewed one of my son’s supported living staff in 20 years. He still has interviewed them and fired some. But I haven’t had to be involved because the supported living agency–that’s one of their core core things. And luckily, we haven’t had to. The turnover’s been almost non-existent. That’s very helpful to me. I’ve thought a couple of times, maybe I should look into it as a parent.

Leila Elabed: Okay. Well, we’re getting close to 7:30. One last question in the chat, is there a link like 101 self-determination? Because the regional center case manager may not be very knowledgeable. I think we are going to share that link with you. It’s on DDS correct? Perfect. We will drop that in the chat in about a minute and you’ll be able to see that.

As we’re wrapping up this webinar, if you are interested in talking more with Lillian or Melissa, please contact them at their email. They were nice enough to give us those. So, shoot any questions over to them directly. You can also contact us if you’re interested in LSA services or have any questions. You can go ahead and email us, visit our website, and please follow us on social media. We got pretty much all of them. And then, visit us in person at Run Home 2025. It’s on September 6th at 9:00 am. This is a fun run, walk, roll, sit and cheer. Just sit and smell the grass. Please come. You can register at the link on the QR code right on the screen and it’s also on our website if you go over there. Thank you so much for joining us for the last installment of 2025 ID Topics and Trends. It’s been a blast. Thank you so much Melissa and Lilian and Dana–really appreciated the conversation tonight. Have a great night everyone. Oh, real quick, the link is in the chat for that person asking for the self-determination 101 link. I want to give you a minute to grab that before. You can also go to the DDS website and search self-determination. I bet it’ll be the first or second page you see. Okay, have a great night everyone and thank you all so much. 

Lilian Ansari: Thank you.

Dana Hooper: Thank you, Lillian and Melissa, you were amazing. 

Melissa Crisp-Cooper: Thank you. 

Leila Elabed: Thank you so much. Bye.
Dana Hooper: Thanks, Leila.