Navigating the Self-Determination Program at San Andreas Regional Center

Featuring: Dana Hooper, LSA’s Executive Director, and Lisa Hartley, San Andreas Regional Center Self Determination Program.

Table of Contents

Hadiyah: I’m excited to be sitting with Lisa Hartley tonight and I’m going to have our Executive Director, Dana Hooper introduce her. Before I do, I’d like to introduce Dana — Dana Hooper’s been part of LSA for the past seven years. His background started well before then when he was a part of the San Andreas regional center because of his son who is a client and was receiving services. Throughout the time he’s been connected to a lot of different organizations and is well connected within this community. Dana has served as past president of the San Andreas Regional Center. He also had a huge hand and other organizations like Lighthouse for the Blind and Visually impaired. He is currently a board president on Branch Services. All of this, let him to his leadership role here at Lizet, where he can make a difference in the lives of individuals that LSA serves every single day. Over the years, he has made such an impact, especially on the state developmental disabilities task force, and that has also helped him with some of his expertise, besides him being the father of a son diagnosed with intellectual disability. I want to thank you so much for joining us tonight, thank you Dana for doing this fireside chat.

Dana: I have the pleasure tonight to introduce you all to Lisa Hartley, and we’re so appreciative of her joining us tonight and sharing all of her knowledge relative to this space, as well as the self-determination program. Lisa is the Associate Director of Consumer Services at San Andreas Regional Center — overseeing Monterey and Santa Cruz counties. She currently manages the Sark self-determination unit and has over 23 years of experience as a manager and a service coordinator, including her previous role as manager of the Santa Clara unit. With over 30 years of dedication to individuals with developmental disabilities through various nonprofits, Lisa has been a resident of Santa Clara county for over 20 years.

What is the Self-Determination program?

Lisa: The Self-Determination program is a type of service delivery model offered through the regional center system and it allows individuals a little more autonomy and choice when they’re choosing services and service providers. It’s different from the traditional service model in that individuals not only develop a work IPP planning team to develop an IPP based on their needs, but in self termination, individuals have the opportunity to develop a budget and a spending plan. They also can work with an independent facilitator that helps them navigate the self-determination process and often will have a person centered plan that helps kind of inform their IPP and their self-determination experience. One service that is really always required in self-determination is the financial management service also called the FMS service.

How is this different from the other models?

Lisa: So the other model is our traditional service model… individuals work with their IPP planning team — their service coordinator to develop an IPP based on their individual needs. In the traditional model, they are utilizing vendored providers so with set off, with set rates so sometimes there can be a limited number of providers and then after it is developed, then an individual will work with their service coordinator to put what’s called a Purchase of Service in place — an authorization. I would say the self-determination model involves a lot, it’s more complex, involves a lot more entities — you’re working with a financial management service… you could be working with multiple independent facilitators and so that makes it a little more different.

Can you explain the concept of “Person-Centered Planning”, and its role in the Self-Determination program?

Lisa: Person-Centered planning is the concept of an individual working with their planning team and individuals that are important to them to identify what’s important to them and who’s important for them. Oftentimes with the person-centered plan, individuals find what foods they like, favorite places they’d like to live, favorite people in their life, maybe future dreams or lifestyle or cultural preferences. A person-centered plan can be very creative, be very colorful, and it often takes several meetings to develop. And they do help inform the person’s individual program plan. One thing that’s important about the person – centered plan is that it’s not required in self-determination so a person can opt not to have a person center plan.

Does the program have any limits with respect to services and supports?

Lisa: It’s important to note that all self-determination services and support start with the development of the IPP so that we can identify an individual’s unique service needs and then we base our budgets… or they’re built on our traditional services and rates. These must be consistent, like I said with the needs identified in the IPP. All services that are identified in an individual spending plan and self determination can be vendor or non-vendor providers, but they must be federally recognizable services, and the providers must be qualified to provide the service– that’s the most important part of the limits around self determination.

Dana: That’s very interesting.

So they may or may not be traditionally vendor service providers?

Lisa: That’s correct.

How does a program promote the autonomy and independence of individuals with developmental disabilities?

Lisa: When people have the ability to help work and create a budget in a spending plan specifically or especially spending plan, it gives them a lot more community access, they have the opportunity to use tendered providers or non-vendor providers. I think it’s really important as they can pay a wage to those providers, a preferred wage that allows them to retain service providers for an extended period of time.

Can you describe some of the challenges that someone might face using self-determination?

Lisa: One of the biggest challenges is the learning curve in the beginning – when you first start self determination, there’s just a lot of components to it — you go to an orientation… you may or may not work with an independent facilitator… you’re working with a financial management service… So having all of those entities involved can be just a little challenging in the beginning until people learn more about self-determination, and they understand the process more. Just like traditional services there still can be challenges with finding providers that doesn’t always change with self determination so I do note that sometimes that can be a challenge for some families, but the good news is I feel we do have a lot of wonderful support available, such as our General transition supports that help individuals understand the process more and we also have a specialized unit at this regional center at San Andreas. Our self-determination unit has specialized case management support to assist people through the process.

Can the case management services be an assisted families who are exploring self-determination for their loved one?

Lisa: When people are starting to access the program, they often get transitioned right into the unit right away. They work with their service coordinator and their traditional unit to discuss self determination of whether or not they feel it’s right for them. If they do then they can ask for more information. Usually that entails going to an orientation first.

Families and get access to all this wonderful information and services?

Lisa: The best way to get started is to talk to your service coordinator and ask them about self-determination. Generally, they’ll probably be already sharing information about self-determination at the end of the individual’s IPP meeting, but asking to attend an orientation is the best way to start. There are resources in the community that are available to help people learn more about self determination.

Tell me about who’s accessing the program – how many individuals are currently in self-determination?

Lisa: Between all counties served, we have approximately 240 individuals that are in our self-determination unit. In total we serve 18,000 individuals.

I recently saw a bunch of new directives — how has that changed as of lately?

Lisa: Yes, we have new directives around — one of the biggest directives that affect our families is just the addition of our General Transition Supports. We have provided those before but there have been some changes in the way we provide them now. Our newest support is our Financial Management Transition supports, often referred to as our FTS. That is support that individuals can get when they’re first entering into self-determination. Also, if they’re changing an FMS agency or moving from one Regional Center to another — that’s another additional support that can help them understand and navigate the financial management services.

Anything else that you can think of that would be critical to share with our participants tonight?

Lisa: It’s important to get as informed as you can about self-determination… so I really encourage people to access resources in the community that are available to them, much as reviewing the DDS website and also the State Council for Developmental Disabilities — a wonderful resource for individuals that are seeking more information on self-determination.

Can you talk about how the self-determination program got put together and how we got to now?

Lisa: Every Regional Center does things a little differently when it comes to self-determination. Self determination has given people a wonderful opportunity to be creative with their life plans. What we did find overtime is that it’s easier to give people more specialized attention when self-determination was made with specialized case managers that have lower caseload. It makes it easier for them to give individualized service to families versus having a large caseload where people might have like five or six self-determination cases on their caseload and maybe working with 80 to 100 individuals. We are regularly getting changes to directives – it’s a work in progress and I think we’re going to see the program change a lot more as we get a lot of feedback from the community.

Hadiyah: I really like that because it puts every provider on a standard four person centered service. You are listening to your consumers and serving and providing them with specialized workers. My understanding is that the program not only has changed in the past year, but it’s also going to continue to change…

What does the vision look like moving forward? When do you arrive at the perfect program?

Lisa: I’m not sure I would have the answer to that since self-determination is a program that the department of developmental service that oversees all the regional centers sets the pace for how it’s going to go. We do get a lot of feedback from the community providers and I think that’s important and how the direction of where things are going. I can only speak for our regional center in the sense that the vision is to just make it an easy process for families. It’s been about 7 to 8 months now with a specialized unit and we’re just trying to get consistent and standardized and I hope we can make it more streamline for families and individuals. Goals to make it a process that’s easy for people to navigate, streamline, consistent, and standardize so that everyone’s on the same page and hearing the same message. For people to get budgets and spending plans, moving forward and approved and implemented.

Q&A

Can families be “IF” for our individuals? That’s an acronym right?

Lisa: Yes. A family member can be an IF for an individual.

How can they get resources and referrals from SARC or any other RC.

Lisa: I think that this person is asking if a family member can be an independent facilitator and yes, they can — we just have to get trained in order to act in that role. There can’t be a conflict of interest in any other way that they were providing another service. I believe that there is information on how independent facilitators can receive training on the DDS website as well as the State Council for Developmental Disabilities — so that’s where I would start in terms of getting that support and looking for resources.

What’s an “RC?”

Lisa: Regional Center.

What is the age range of the SARC clients usually — that use this self-determination program? Also, is there a limit to the types of services that you can use the funds for?

Lisa: It is typically older — it’s all ages really, but adults primarily. We have a handful of individuals under the age of 3 as well. We serve from birth to the end of life. Self-determination is available to all of those age groups, but there is certain criteria for under age three. Yes, there are limits to what can be provided — it’s important that services align with the IPP and what the needs are and that the services are built on traditional services and rates. The spending plan has to align with the self-determination definitions and budget categories. There’s certain definitions that we have to follow in terms of all the types of services, we are mandated to follow those guidelines and they also have to be reimbursable services.

Let’s say I have a son or daughter and I want to put them in an LSA home and I also want them to be a part of the self-determination program – how would that work Lisa and Dana? Would that work for someone like me?

Dana: Someone in the self-determination program might be looking for a home or a residential placement. There are certainly several models and quite a few providers.

Lisa: Someone could decide to live in an LSA home and fund that home through their spending plan. There are types of homes that are being funded through a different funding stream like Medi-Cal, which would not be a home that could be funded through self-determination.

Where do I start to find more information on the self-determination program?

Lisa: If someone is interested in self-determination, the first thing they should do is discuss it with their service coordinator and just say that they’re interested and then they can attend one of their orientations. The self termination unit does about two orientations a month. The orientation schedule is also on our website and they can register for that. Once they decided that they are interested, they would let their service coordinator. Then the service coordinator would get connected with a manager who will assign them a specialist. They’re working in conjunction with the service coordinator that they already have, as well as with support from the self-determination unit.

What can I do, as an advocate, to support SARC and the self-determination program?

Lisa: I’d say to just be as informed as possible on all of the program itself. And if you’re active in the community — to make sure that you are giving out information that is consistent with what’s on the Department website and in alignment with the directives… also reaching out to the regional center and gathering more information. I think being informed and helping families be informed is a really great way for advocates to assist families… it’s really helpful if everyone is on the same page and saying the same thing.

Dana: A lot of families tell me that their service coordinator is new and not that knowledgeable — and that can be a tough starting spot. For tonight, maybe some concrete examples of what somebody’s self-determination plan actually looks like, and what kind of services.

Lisa: If a person expresses interest or an individual family expresses interest to their service coordinator, and maybe the coordinator is newer — acknowledge you can always asked to speak to someone’s manager and get more information because I’m quite sure the managers knowledgeable on the self-determination process and it’s okay to do that if you feel like you were trying to move forward with the process and you’re not able to because somebody may not have as much knowledge. As far as real life examples — it looks different for every single person. Let’s say they are going to do a person centered plan which could take a while for some people… some individuals come into self-determination and they want to start working on an IPP and developing a certified budget… really depends on what the individual wants to do. There’s a lot of months of planning and it’s early up to the family and the independent facilitator if they choose one plan to develop. The ball is in the court of the person that’s actually the individual because they’re developing their own spending plan and filling out all of the FMS tools.

Dana: I could envision a plan for me and my son that includes a self determination plan which has a budget for a day program. As parents, we often think about the day and what plays out during the day.

Lisa: There’s a lot of freedom in the spending plan in the sense that if you’re developing a budget on traditional services, and are now accessing adult services through the regional center, we might build a budget on Independent Living Skills, transportation, day programs — for example. All of those services would come together to create a budget. There’s really a lot of freedom that they can kind of choose the staff, choose the wage, and put it all under one category and some cases.

How does the referral process work and is there a designated coordinator that we can contact as an independent facilitator?

Lisa: When an individual expresses interest, you’ve just gone to the orientation and you said to your service coordinator that you’re interested in moving forward — service coordinator contact the self-determination unit and ask for a specialist to come to a meeting… an initial meeting that kind of acts as a bridge between the regular unit or the traditional unit and the self-determination unit so that the specials can ask any questions. After this process, the individual will be transferred to the unit and in case is in the self-determination unit.

Hadiyah: You’ve dedicated your lifetime in service of this population. We brushed over the 20+ years of nonprofits and other entities in which you’ve spent serving this particular population. I want to thank you. I know you’ve heard and seen a lot up until this point.

If you could wave your wounds and make anything appear or disappear, what would that be?

Lisa: That’s a loaded question. I’d probably say to take away bureaucratic roadblocks — not just through the regional center but across all of the populations that I have worked with in the mental health community and working with people with developmental disabilities — over the years it has been getting better. When you are family or an individual and are struggling trying to access services It can feel like it’s waiting through quicksand at times.

Dana: I’d certainly need to change a couple of things. I want to echo what Lisa said — there is an awful lot of bureaucracy. Sometimes it’s good but most of the time it can get in the way of doing the right thing. I realized at some point that not everybody was as equally prepared to navigate the system… It was to fight to empower people to do the right thing. Sometimes it’s not so obvious what the right thing is.

If a consumer wants to live independently in their own home, what do you recommend for a way for the self-determination program to help?

Lisa: If someone wanted to live independently in their own home, I’m assuming that this individual is living not with family, and completely independent in like an apartment or a home that maybe a parent has purchased. I would say it depends on the level of need of the individual. Somebody could be living independently and only need a little bit of support and maybe some independent living skills. It could be someone that requires a lot more support — somebody that might need around the clock supported living services. The needs of the individual would have to be identified in the IPP.

Is there an upper limit for the budget allowed per person? Are there parameters for the budget?

Lisa: I wouldn’t say that there’s necessarily parameters other than to say that budgets are built on the needs that are identified on the IPP and then spending plans follow suit from there. There are some restrictions with regard to FMS and whether or not they’ll accept certain budgets so there are budget limits with regard to the FMS agencies. Some FMS agencies have caps on what budget to work with. We have seen budgets range from fairly high and be in the mid range and that’s all based on the individual’s needs. We see budgets range anywhere from $2,000 to over $1 million.

How can we help to get rid of those bureaucratic robots?

Lisa: I think we all encounter them in any kind of social services system across-the-board. I think that from the beginning of time that’s been the case and we just all have to work to try to build systems within the systems we work in to create systems that standardize processes and procedures so that we’re consistent. Most important part is to be as supportive with the individuals we serve and to be as person centered as possible, and try to get through it altogether as a team.

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