I/DD Topics & Trends with Javier Zaldivar

Javier Zaldivar, How Organizations Like SARC Can Meet the Growing Needs of the I/DD Community

What services does SARC offer and what is their role in finding a home for a loved one with I/DD?

Javier: So the role that the regional center plays in services really is dependent upon the family and the individual. It’s important that we are good listeners and we help formulate a plan as we determine where exactly we need to be with that individual. I consider the regional center broken into segments. We serve individuals from 0 all the way to their end days. So you might imagine that an individual that is 3 years old is going to need something very different from somebody who’s 10 and somebody who’s 20.

We’d like to consider ourselves (SARC) a partner as the individuals we’re serving are transitioning from stage to stage. So their services and these services that we offer again, depends on where we are relative to the situation, but if we’re serving a child or a toddler in the early start program, some of the services that are often offered are things like speech therapy, occupational therapy and therapies that help development. It’s so critical that we get in there in the early stages so that those individuals have the maximum potential as they enter into their lives.

The other services that we offer are situational, but a lot of the younger children that we often serve now between 5 and 15, a lot of those are often around behavior management, respite daycare and the social recreation that was recently reintroduced as a regional center service and those are situational on where the individual is, the key is when the individual is transitioning into adulthood. Everything changes in adulthood, and the individuals that we’re serving have a voice, and we go to them. But what is it you want?

A lot of times that may include services such as improving independent living, or giving them an opportunity to move out of their home and putting them in home like the wonderful homes that you operate here at LSA. We have supported living programs. We have employment programs, and we have everything that may be needed to help that individual be successful. And of course, the services that are offered are going to be relative to where they are, and the regions that are covered.

But in the end it really is about going to the individual and making sure that the plan that we formulate is responsive to their needs. So we wanna make sure that the services and the service system are gonna be reflective on our website.


Who is eligible for services? 

Javier: There are 4 critical categories of individuals being; individuals diagnosed with autism, individuals diagnosed with an intellectual disability, individuals diagnosed with epilepsy, and individuals that are diagnosed with cerebral palsy.

Once we have a diagnosis and it has to be before the age of 18, a lot of times we get referrals after the age of 18, when the diagnosis is made. But we have to be able to draw the line back to before the age of 18. And then we look at the areas of function that are inclusive and once again it depends on the functioning level of the individual.

The fifth category is called the fifth category. These are individuals that do not have one of the primary 4 diagnoses, but they have a diagnosis that makes them function as if and they need support as if they had an intellectual disability. The best way to understand that the fifth category is somebody who is developing typically and at the age of 17 they have a traumatic accident, a drowning, a car accident that’s affected their cognitive ability. And because that happened before the age of 18, these individuals would be considered under that fifth category. We often get referrals for 40 year old, 50 year olds, when they are part of a family unit, and as the parents pass on the oftentimes, if there are siblings or the family members, they don’t know, and maybe can serve that individual, so we get referrals, for services and as long as we’re able to draw the eligibility before the age of 18 we will be able to serve them. So we encourage people to definitely look at our website. We have not only a breakdown of these categories, but we have an FAQ.

How can organizations like SARC keep pace with providing services in a rapidly changing world where we’re only seeing a rise in the increase of individuals with I/DD while preserving quality service? 

Javier: It’s founding back in 1965, when the regional center system in the Lancasterman Act was signed. It initially was about making sure that individuals were served in their communities and not in state hospitals. But here we are almost 60 years later, and the system is evolving.

And it’s becoming,not only more sensitive to the populations that we’re serving, but it’s also becoming more responsive to the different elements that are required, and some of the innovative programs that are being introduced.

The biggest one is called the Self Determination Program. The self-determination program is exactly what it implies, where the regional center of providing the service will work with the individual and their family members or their circle and we together will come up with a package, and then that individual will be given a certain amount of money based on that package, and then they can go and buy a service that works for them, versus them being forced to use a regional centers service so that’s self-determination program is huge we’re still rolling it out as the State modifies. 


The other program is called the coordinated Family Support Program. It’s really new. The program began barely on March first. One of the feedback, and as part of that evolution of the system is that many family members were concerned, that they weren’t getting the necessary support and the necessary steps in order to take advantage of other programs, that may be available so the coordinated family support program is that may be available so the coordinated, family support program is there to help individuals navigate the very complex, the reality is, we are a bureaucracy, like everybody else, and when you add the regional center bureaucracy to the medical bureaucracy to the school bureaucracy, it can become overwhelming for anybody. So the coordinated family support person can help the family navigate these complicated systems so that they can get the needed services in their home and another real innovative program that the department is rolling out over the last few years is the state. 

Hospitals are all close back to the day an individual with a developmental disability was born. They were put in a state hospital, no questions asked, and that’s just the way it was. But as that system changed, and as all state hospitals are now closed, except for those that have secured perimeters for other concerns, that have to be addressed, but people are now living in their community, so the department along with the regional centers have introduced new Home models we have the enhanced behavioral support homes where we’re looking at serving individuals that may have more intense needs. And we offer more intensive packages and supports in order to keep that individual and the community safe. We have a community crisis home. That is there too, instead of somebody going straight to a police station or straight to a lock setting, they can go into one of these community service homes emergency homes.

If, of course, our space, and then at this regional center, we were just awarded a brand to open a memory care home with the first of its kind in this region. It’s to serve individuals that are facing dementia as they get older, like a lot of us.

The functional cognitive needs change. So this new model of home, the main memory care is going to make sure that these individuals maximize their opportunities and that their cognitive abilities are going to be front and foremost and make sure that the staffing has appropriate training those are just some of the innovative programs that have been rolled out over the last few years, and a lot more.

Any plans from SARC to expand services? Can you also touch upon the most and least utilized services?

Javier: I think the system is going to look very different in a few short years, and I think it’s really going to be for the betterment of the entire system. But more importantly, more responsive to the needs of families that are ever changing, and of course making sure that we have other supports, including nursing support and behavioral support. And we have employment support. So we’re really looking at the totality of the individual and making sure that their needs are met and a lot more innovation is forthcoming. And you can always follow us on social media where we put a lot of this. But our website is constantly updated with import information to keep you all informed.

Many parents worry about their children transitioning to adult services because of concerns like staffing shortages and limited day programs.  How has SARC’s service coordination and programs been pivotal in ensuring adults with developmental disabilities keep and maintain access to much needed support?

Javier: Our service system is no different from the other service systems where we’re competing against each other, that not only qualified and trainable, but also investors a lot of times. I always advise that parents look at services, not through the eyes as a parent, but as an individual that is there to support your loved one. It’s hard for us to make decisions for loved ones. When we’re not looking at them as adults, we’re so protective that it makes it really complicated. But I think the important thing is making sure that if we are looking this particular region is very far.

Not only are we dealing with it just being, you know, almost unattainable in many cases, but we also have local minimum wages that affect our ability, and a lot of people think that regional centers have the ability to just raise rates and pay the going rate the reality is a lot of what we do is actually out of Sacramento, and when we were closely with the department we had to formulate a strategy that will ensure that the service system is, in fact, there to meet the needs, and the staffing shortage, the pandemic really, I think spotlighted some of the complexities of the system, and how that, how it could, in order to ensure that the needed services would be provided even at a minimum, one of the big challenges that we face for many years is getting nursing services nursing services are a must, for many people.

How does coordinated family support differ from the work done by service coordinators?

Javier: The coordinated families of support program is intended to be a more intensive connection and collaboration with the family and individual. A lot of times the Service Coordinator may not have the time or expertise in navigating, so the coordinated family support program and the individuals that provide that service, they are going to become our resident experts.

So if a family needs to contact medical or IHSS, they need to work with an insurance program. These people are going to be much more specialized, and in an insurance program. These people are going to be much more specialized, and they’re going to work in collaboration with the service Coordinator. But they’re going to be there to answer more readily. The navigation questions out of, and if needed, for a portion of the hours they can fill in under emergency bases. So if they were helping navigate a family, maybe because they are moving out, and part of that is doing independent living or supported living hours, just as an example. And if the service is not able to be provided, they can step in for a certain number of hours and provide that service directly. So those are the biggest ways. They are more intensive, more expert in their responses and navigation, and they’ll be able to provide direct support if appropriate, in order to fill in gaps for various programs. We actually have a coordinated family support webinar coming up and you can look at our social media. We have the dates listed there, and the program is operational.


Will SARC have involvement in the care court initiative that helps those that do not have anyone who can or has to advocate it for them?

Javier: The Carer Court is new, and you should know there’s a couple of lawsuits pending to change the care course. The Care Court is an initiative signed by the Governor in this last budget cycle and the intent is to provide needed care. We will be there to advocate and to coordinate with individuals if they are mandated to participate in the care accord like we do right now, we have many individuals that may have legal issues. Even with mental health issues, it’s important to remember that regional center services are available. It’s getting to that point where the individuals are going to get the needed services. So we are on standby with the Carecourt, and we certainly are ready to provide advocacy and support as needed. 

How do I sign up or get referred for the Coordinated Family Service Support program?

Javier: There will be a webinar Monday March 27th from 9am-12pm and March 29th 9am-12pm. Registration is required. There will be translations in Spanish, Vietnamese and Tagalog.
Coordinated Family Support Services- information workshop.

March 27th registration link: https://us06web.zoom.us/meeting/register/tZEpdu-orzkoEtfZvw2_8j2QQxVFmcRwoUI_

March 29th registration link: https://us06web.zoom.us/meeting/register/tZUkdeqrqj0sHd33sAZMLK9lar9NhYFBFtpqhttps://us06web.zoom.us/meeting/register/tZUkdeqrqj0sHd33sAZMLK9lar9NhYFBFtpq

How important is it to move a 25 year old, an individual from school age unit to an adult unit, in your opinion, and then I’ll have you follow up.

Javier: We understand a lot of times when the one thing we strive for when people are transitioning is somebody that’s familiar and somebody that is trying a lot of times the way we structure our units is to provide a specialty of sorts, it order to ensure that when we do have a handoff, that the individual is going to be as well serve as they were previously. So I understand the relational piece, and I certainly understand the need for trust, especially the need for trust, especially when a big change happens. I understand. But it’s not necessarily so critical, and hopefully there’ll be a warm handoff between a school age, individual and an adult worker and as I mentioned a lot of times we are trying to specialize our units. The adults are going to be much more familiar with the adult programs than somebody that is school age. And they may be more informed, or related to IEPs.

So it isn’t important that we follow our transition process. But we’re always open to having a discussion and providing a hopefully A/C in this transition from one trusted service coordinator to the next one, and hopefully that the individual will be provided with the optimal services.

What is the usual length of time that it takes to get a health and safety waiver approved?

Javier: In all transparency. I’ll tell you that it can take months to get a health and safety waiver approved. However, we do have assurances from the Department that for critical support we may be able to get a health and safety approval within a 30 day timeframe.

Dana: I think the regional center and DDS, you know, move along pretty well. But it took us a long time to get, you know, all the data together, but I think all told, it took us 6 to 9 months.

If a group of parents form a community and an apartment complex where the parents and children live in the same community, but the children live independently with support, will the regional centers support such an arrangement? 

Javier: If it meets the Federal standard, and if it passes the Federal test, then we’ll support anything.

How many community crisis homes are available in the region and locations? One of the one crises that we have up in operation, serves up to a maximum of 4 people, and this particular home is located in San Mateo County, and we have a specialized provider that is providing care in that particular home. We have one, and that is for anybody 18 and above that meets the criteria for needing crisis support. Then we have several enhanced behavioral homes. We have a total of 7 or 8 here in Santa Clara County. We have 2 for children. One in Santa Clara County, and one in Santa Cruz County, and we are in the process of opening 2 new enhanced behavioral homes out in Santa Cruz county, and one in Watsonville. For the crisis home we have one operational and we have one request for proposal for a children’s crisis facility. We understand that’s also a big need. But we’re in the beginning stages of that. So the short answer is, one crisis, home operational in this region for up to 400.

How have the increases in government reimbursement rates improve the I/DD housing crisis?

Dana: So the increase did a couple of really positive things.It took into account where, where your business is operating, and shows in higher cost areas like ours the rates were adjusted up. The second thing it did is move the needle significantly up for residential care providers. That increase in 2 increases over the past 2 years, probably close to 35%. This allows those providers to pass on wage needed wage and benefit increases to staff. But it’s probably more stabilized the situation than anything else. Future increases plan to increase the budget which would make it a lot easier for a new provider to justify going into business so I would expect to see you know more. Expect to see new providers going into business or expanding over the next couple of years directly as a result of this new rate mechanism and the increased levels.

Javier: It hasn’t necessarily stabilized throughout. As I mentioned earlier, we don’t have a lot of new vendors that are coming because of the rates. Think of it this way, and when I work with my board, when we were in tough times when we had the great recession back in 2008 when I worked with my board, when we were in tough times, when we had the great recession back in 2008, the service system lost over 1.5 billion dollars that they took. They put a lot of their meaning into the legislature but a lot of barriers for vendors. That’s when we lost the bulk between that 2008 and 2014, a huge span, and when they finally started opening the spigot and supporting the vendors, many were already so far behind the 8 ball that even though the rates, were better they were so far behind it wasn’t possible for them, and they still ended up closing and so it’s important that we work with legislators.

How do I know if self-determination is right for my child?

Javier: I would encourage you to go to the orientation with. They give you a broad overview and they compare not only what you get in the traditional model, but here’s how it may translate in self-determination.It all starts with you being ready to listen to the information, and so I would encourage you to go to the orientation. It’s a great first step.

Can the SBP be a perfect way to adjust the pay gap for service providers and serve as a way to elevate competition for individuals and to support new programs?

Javier: It can, but remember every decision that’s made in sub-determination is gonna have a ripple effect. So if we gave you $1,000, and for $1,000, you hired somebody for $100. So you’re gonna get 10 hours of the service. But if you wanted to pay something for $100, you’re gonna get 10 hours of the service. But if you wanted to pay somebody $200 for said service and that means the amount of hours available is going to shrink but you make it a better qualified staff, compassionate staff, a better trained staff. It’s gonna be a balance. So I would certainly encourage people to work with their independent facilitator or their service. Coordinator, in order to weigh those decisions.

What’s the number one issue that the system is facing from your perspective?

Javier: I think the number one issue is ensuring that the service system we have people to work, and I think a lot of that is very tied to the rates that are being offered and regional centers hands are tied. We can’t go above the median rate, but I think, making sure that we have appropriate stuff and I can get you a body. The staffing and staffing stabilization, I think, is one of the numbers. One issue next to housing and affordability. But it’s really the staff. It sounds like that is a ubiquitous issue that a lot of organizations are facing, but particularly in this community where we’re serving one of the most vulnerable populations.

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