Update on California’s Developmental Disabilities Services System

(logo whooshes) – Dr. LeeAnn Christian
is the deputy director of the Community Services Division for DDS with over 30 years of
experience in providing person-centered direct
and clinical services, and before joining DDS in 2017, she was the chief clinical officer at the Regional Center of Orange County. And Dr. Lauren Libero was previously a UC President’s postdoctoral fellow at the UC Davis MIND Institute and is now the autism expert specialist at the California DDS where
she provides expertise and conducts research on autism
and associated conditions. She also coordinates
efforts with the department, regional centers,
stakeholders, and universities as well as other state agencies. So let’s welcome Lauren and LeeAnn to the podium. Are you going to talk
at the same time, or? – [LeeAnn] Not at the
same time, but together. – (laughing) Good.
(audience applauding) – Really be good. I get to talk, then she’s gonna talk, then I’m gonna talk. – Thank you. – Hi, good afternoon, everyone. We will do our best to follow the green, yellow, and red
lights to keep on time. First I really just wanna thank everyone. We’re happy to be here on behalf of Director Nancy Bargmann who
isn’t able to be here today, and thank you for the introduction. In the next 30 minutes, what we wanna do is give you just a high-level overview of the Developmental
Disability Services System in California, I know many
of you are familiar with it, working inside the system,
and some of the changing information about the population of folks that we’re serving and
some of the priorities and initiatives that we’re working on. Okay, perfect, we have no
conflicts of interest to disclose. In our talk today, we’re just gonna give an overview of the Department
of Developmental Services, DDS, regional centers, the
population served and trends, and priorities and initiatives. And our learning
objectives are identifying some major trends in the characteristics of the individuals that we serve, and again, the priorities and
initiatives for our system. So although many of you know,
we’ll just to through this quickly and get to the
meat of the presentation. DDS is the state agency that’s responsible for overseeing the coordination
and provision of services and supports for now
over 333,000 individuals, Californians with
developmental disabilities. And we contract with 21 regional centers, nonprofit private organizations who are geographically
located across the state to provide those local services
and supports to individuals. And all the services and
supports are provided in accordance with the Lanterman Act. Just for some general information, in this current fiscal year, the budget for the
Developmental Services System is $7.4 billion, and the governor’s budget for next fiscal year ’19-20 includes $7.8 billion for the system. And the 21 regional centers employ about 7,300 personnel and operate in over 70 different offices
throughout the state, which is really kind of the
heart of the Lanterman Act in that local presence and
support of communities. And there are over
423,000 service providers including families,
and excluding families, about 43,000 service providers
throughout the state. I think this is a good
visual of the system that just shows kind
of how we are operated, and to just bring your attention to the state-operated services,
which I think historically folks have kind of
talked about DDS oversees the developmental centers. We’ve changed our language
as the system is moving much more towards being an almost entirely community-based service system to saying state-operated versus
vendor-operated services. And through the department,
the state-operated services include services to
individuals who are residing in developmental centers,
and as of December 2018, Sonoma Developmental Center closed, and the last individual moved into their new home in
the community, and– (audience applauding) Over the next several, over at
least the next year or more, about 118 additional individuals from Fairview Developmental Center and Porterville Developmental Center’s general treatment area will
be moving into the community. So similar to national trends, our system, again, is really moving
to be an almost entirely community-based service system. And I’m not sure how much people have kind of thought about
that as a historic event in our state, but in
1968, about 13,000 people were living in developmental
centers, and as of January, there were less than 400 people living in development centers. So that has been a push of the system since the Lanterman Act came into effect and really was focused on developing a robust community service system. And then of course, we
contract as a department with the 21 regional centers who in turn provide local case
management and who vendor the providers who provide the services and supports to individuals. Kind of as key responsibilities for DDS is that broad policy and
statewide leadership, setting priorities, setting
standards and procedures that kind of guide the operation of the service system across the state, monitoring service delivery, and providing technical support when issues come up, providing support to regional centers, the provider community, and
the individuals we serve. Many of you work at regional centers, and here I think what’s
really critical to say is that the face of our service system is really the service coordinator. That is the person who families meet, that’s the face of our
entire service system, and that relationship that’s built to ensure that individuals
and their families get the service sand supports they need and again, kind of that foundation of the Lanterman Act,
that 21 regional centers are geographically located to understand and support the unique
needs of their community. So the services include
intake and assessment, helping individuals
advocate for themselves and also helping advocate for them, assisting with access to resources that are available in the community, and of course for funding
services that individuals need. And then just briefly
touching on eligibility for regional center services, it’s all up here on the slide. You’re eligible if prior to age of 18 you have a qualifying disability that’s expected to be
lifelong and in addition that is substantially disabling for you and provides significant
functional limitations in several areas of major life activity. So now onto the more
exciting (chuckles) data. Whoa. – Okay, so we have 21 regional
centers across the state. Each regional center represents
its own catchment area. So the regional centers
are geographically diverse as well as in terms of their population. Our smallest regional
center is Redwood Coast. They serve 3,900 individuals, and our largest regional center is Inland Regional Center who serves 35,500 individuals as
of January of this year. And you can see, there’s a wide range across all 21 in terms of how
many individuals they serve. Okay, in terms of our
total state population, over the last 10 years,
we’ve seen a 42% increase on the number of
individuals that we serve. So in 2008, our total was 232,000. As of this year, we’re at
333,000 individuals total. And our individuals are broken down into two groups on the graph here. In gray, you’ll see
our Early Start kiddos. These are children under the age of three. And then in blue, these
are our Lanterman-eligible individuals, so these are
individuals age three and up who meet the criteria that
LeeAnn just described. And in addition to that,
we have individuals who are currently under
assessment at the regional centers to receive eligibility
for either Early Start or Lanterman regional center services. And in January, we had 12,500 individuals who are currently in the assessment phase. So the regional centers are really busy in terms of bringing
individuals in to assess them for eligibility and then
making them eligible and coordinating all of their services. Okay, so let’s look deeper at what our population looks like. So in terms of their living arrangements, over the last 10 years,
we’ve seen an increase in the number of
individuals who are residing in the home of their
family, parent, or guardian, and we’ve seen a decrease in almost every other residence type. So you can see at the very top there the percentage of individuals in developmental centers is going down. Obviously we’re moving them
out into the community, so that was expected,
but we’ve seen actually a 60% growth in the number of consumers who are living in the home due to our increasing
caseload of children. So we’re seeing a large growth in the number of individuals
under 22 who we serve, and obviously most of
them are gonna be living in the home of their parent or guardian. However, across the
lifespan, we’re also seeing an increase in the number
of adults who we serve who are choosing to live at home. We’re seeing that more often
than we did 10 years ago, and you can see that in the
bars on the bottom there. So 10 years ago, 74%
were living in the home of a parent, family, or guardian. And in 2018, it was 80% of who
the regional centers serve. Okay, we’re also seeing
a change in the landscape of the racial and ethnic makeup of the individuals in our system, and this is similar to what we see across the state of California in general, but the largest shift has been in Hispanic or Latino individuals that we serve. So we’ve seen an increase in individuals who identify as Hispanic or Latino. 10 years ago, they were
34% of our population, and now they are 39%,
whereas we’ve seen a decrease in the share of individuals who identify as white or Caucasian, 39% in 2008, now they represent 31%, so
their share has gone down. I should also note, half
of the Hispanic population is in the three-to-21-year group, so we see a large increase,
particularly in childhood for that ethnic group,
whereas only a third of the white or Caucasian group
is in that same age range. So we see more of the share of individuals who are white are
actually adults right now. And then overall, there
are at least 23 ethnicities and 45 different languages identified by our consumers across the state. So we’re seeing a big shift in terms of the racial and ethnic makeup of the individuals that we serve, and I think that that’s
an important indicator of making sure that our
services and supports are all going to be
linguistically accessible to individuals and culturally
sensitive and appropriate for the children and adults that we serve. So we will probably see some shift in the way that our system is gonna need to be supporting individuals
of all ethnicities. Okay, we’re seeing some changes in terms of the ages of the individuals
that we’re serving, and we’re seeing that individuals with disabilities are living longer. So 10 years ago, 8% of our
population was 52 or older. Today it’s 10%, so that group
is increasing, which is great. Okay, all right, in terms of
the five diagnostic groups that are eligible for services, those include Autism, Cerebral Palsy, Epilepsy, Intellectual
Disability, and then Other, which is our fifth
category, and this would be disabilities that are similar in nature to an intellectual disability. We’re seeing changes
in the share of these, and I do wanna note that these aren’t mutually exclusive categorizations, so an individual could have
more than one diagnosis, and they’re gonna be
counted more than once here. So if you’re trying to add up the bars, they may add up to more
than 100%, and that’s why. But the key takeaway here
is over the last 10 years, we’ve seen an increase in
the share of individuals who have a diagnosis of autism. So they’ve risen from 19% to 38%, whereas the share of all
other diagnostic groups have been declining
over the last 10 years. Okay, and so looking
deeper at the population of individuals with autism, these would be the individuals with autism 10 years ago, in 2008, in blue, and then in orange, this is 2018, so you can see a big rise in the number of individuals
with autism in our system. We actually saw an increase of
175% over the last 10 years, and you can contrast
that to our total growth that I told you about was 42%
for our entire population. So we’re really seeing a
disproportionate growth in the number of
individuals who have autism. And the totals have
changed from 38,558 in 2008 to now we just hit 106,000
individuals who have autism. And if you look closely at the graph here, they’re binned by age group,
three to five on the left going up to 62-plus,
and you probably noticed the bulk of the bars here
are on the left side, so at the younger ages, so
you see the tallest bars are at the youngest age groups there. And we see, well, that came out funny, 80% of the total population
of individuals with autism are under 22, so most of those folks who have autism that we’re
serving are children. So that’s gonna have some
important implications for how we serve these
individuals as they age. We’re gonna see a sharp increase in the number of individuals with autism who are gonna be transitioning from the school system
into young adulthood. And looking at the
graph on the right here, this is all of the
individuals that we serve who are under 22, and autism makes up 60%, so they’re making up more
than half of the children that we serve in our service system. Okay, so our increase in autism has pretty strong implication for our service delivery
system and being prepared to support individuals
who are on the spectrum. This has become a focus of our department and probably the primary reason for my position in the department, but this isn’t precluding our work for all of the other diagnostic types. Our department is still
dedicated to serving individuals of all
development disabilities, and the services and
supports that we develop and prioritize are gonna
be with the thought in mind that we wanna serve everyone that we can in the best way possible. Okay, you ready? – So as Lauren went through, you can see a lot of the changing demographics of the individuals we serve,
and so as we’re identifying those changing, the
trends that are changing in our population, we’re
also trying to learn what their changing needs
and expectations are of the service system, and
I think one of the things that the department has
really spent a lotta time on and continues to be committed
to is community engagement so that we can have ongoing discussions with stakeholders to learn
about what their needs and expectations are
from the service system. So in addition to just kind
of the national trends, particularly in their focus
on community-based services and decreasing or closing
developmental centers, we are also relying on that information that we’re gathering from stakeholders to determine what the
department’s priorities and initiatives are in these coming years, because as we see and as
Director Bargmann would say, “We have new architects
of our service system,” and so we’re listening to them to see what that service system
needs to look like and the expectations of what life is like in the community where you live, what you do during the
day, the relationships that you develop all
have to be acknowledged. And so as far as the
priorities and initiatives, the first thing I just wanna touch on is that developmental center closure. I talked about it a
little bit, but in 2012, there was a moratorium on anyone moving into the developmental center, and then in 2015, there
was the closure plan for three of the developmental centers, Sonoma, which closed in December, Fairview Developmental Center and Porterville Developmental Center’s general treatment area which are scheduled in that closure plan to close in 2021. By the end of 2021, then,
and much likely very, and likely more, pluh, likely
sooner (laughs) than 2021, given that 118 people are
actively transitioning into the community, we are really focused on community development
and what we need to be doing to not only develop
resources for the individuals transitioning from development centers into the community,
which of course has been the major focus over the
past couple of years, but also to be developing resources for individuals who never have lived in or never would have lived
in a developmental center, particularly those individuals
who have very complex medical, behavioral,
and psychiatric needs. And so through the Developmental
Service Task Force, which is a statewide task force, through other community engagement, we have developed new service models. Residential has been the primary focus to assist in having people
have good-quality lives in the community and homes
that address their challenging medical and behavioral
and psychiatric needs. But also importantly looking
at what those resource, what that resource development
or community development needs to look like given how many people are living at home and want
to stay living at home. So I think the most important note here is that our community
development has to meet the changing needs of
the people that we serve, and it has to keep pace with those needs, which I think is something
that we continue to work on. In addition to that, I
think one of the things that has come up as a system issue is how do we do that in
not only a timely way but in a sustainable way,
and we don’t have time in our short time here,
but one of the barriers potentially to developing needed resources is making sure that providers
have sustainable rates. And so I just wanna quickly mention the department’s requirement
to engage in a rate study and that you can get a lot of information about the results of the rate study and some of the proposed new
rate models on the DDS website. As far as the Safety
Net, as a result of input from that Developmental
Services Task Force and other stakeholder engagement, in 2017, the department
released a Safety Net or crisis plan, and the focus of that Safety Net was really
ensuring that crisis services and services that would prevent a crisis were developed or
expanded in the community to support people moving out
of the developmental center and also, again, to
ensure that individuals who are living at home can stay at home and not be placed in more
restrictive settings. So the Safety Net Plan itself, which is not a one-time
document but an ongoing planning process has been looking at how to develop crisis services,
mobile crisis services, acute crisis services
throughout the community as well as some of those
intensive support models in residential settings to help people so that they can avoid going
the more restrictive settings. It is really hard to
do these priority area that could take up their own
time in more than 30 minutes. The next one is home and
community-based services rules. In January 2014, the federal Centers for Medicare and
Medicaid issued new rules to enhance home and
community-based services, and those homes and programs have to meet those new criteria by March 2022 to qualify for federal programming. And so in the past budget acts, there’s been money
allocated to the department to assist providers in
changing their practices, changing whatever they need
to to come into compliance with those rules, and the final rule really focuses on what is very consistent and aligned with the Lanterman Act with regards to making
sure that individuals are integrated in their communities, have opportunities to
participate in their community, and have full access to the benefits of living in their community. The Self-Determination Program, Governor Brown signed that
into law in October 2013, and the department, and
the goal was establishing a statewide Self-Determination Project so that individuals and families could have more freedom and control and responsibility over
the services and supports that they receive in order to meet the objectives that they set forth in their Individual Program Plan, and so DDS has been working
the stakeholder advisory group over the past several years to develop the framework of that
Self-Determination Project. It did get approval from
CMS in June of last year, and so in the phase-in of the program, 2,500 participants were
selected in October 2018, and now the process currently
is that regional centers and local advisory committees
are receiving training on how to conduct their own orientations in their local communities
with participants as the program is moving forward. For Competitive Integrated Employment, this effort really began in 2014, and it is an interdepartmental project with Department of Developmental Services, Department of Rehabilitation, and the Department of Education, and a variety of other stakeholders developing a blueprint for
community and integrated employment which was
released in May of 2016, and the purpose of that blueprint is to improve collaboration
between departments so that we can all help prepare and support individuals
who have intellectual and developmental disabilities to have opportunities and
to join the workforce. And it’s really focused on
increasing those opportunities to prepare for and participate in competitive integrated employment, and just to make sure
that people are informed about the decisions, the
options that they really have to join the workforce
and what kind of supports they can get to prepare
for that transition to it after school and engage in it
throughout their adulthood. Since 2016, DDS has
implemented two programs that have had an impact on
a couple a thousand people to date, and those Paid Internship Program and competitive employment
incentive payment programs to help get people experience
with and into situations that lead towards integrated employment. And then the last priority
that we’re gonna talk about today is the
Disparity Funds Project. Annually, the department
and regional centers collaborate to gather information through the purchase of service, and what over the years has been indicated is that there are significant disparities that exist among some
regional center populations, particularly along the
lines of race and ethnicity. And in 2016, a section was added to the Welfare and Institutions Code allocating $11 million annually to the department to
assist regional centers in implementing strategies
that reduce those disparities. In budget acts since 2106,
that $11 million was expanded to fund projects through
the regional centers and also through
community-based organizations. And in the past fiscal year,
actually in this current fiscal year, ’18-19, we
approved 70 projects, and 32 have just come to an end
at the end of December 2018, and so we’re in the process of working with the regional centers on gathering outcome information and
being able to present that information to the community. But the projects have really focused on helping increase access to information about services through the
regional center system, providing assistance to families and individuals during the intake process, and just empowering people to understand the system and advocate
for their needed services. And then finally, again,
just kind of, I know, a very high-level overview
with lots of details that hopefully would be
available on our website if you’re interested in a
particular priority area. I think that one of the key things, again, in looking at the trends in our population is that we really are committed and want to hear from
our stakeholder groups and work collaboratively
with the regional centers to meet the changing needs, to keep pace with those changing needs so that people can have quality lives,
healthy and safe lives where they wanna live and be doing what they wanna do with their days, and we really hope that
just this high level has been useful to you. And again, on behalf of Director Bargmann, I wanna think for your
time and invitation. (audience applauding) Thank you.

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