I'm going to introduce our
next speaker, Vivian Haun, who's going to speak from
navigation to transformation, addressing inequalities in California's
regional center system through community led solutions. We all know that there are disparities and how much
money the state spends on regional center
clients based on their race or on the
language that they speak, and the next speaker has analyzed how that
happens and has concrete ideas about
how to make it better and has written
that into a report. It's with great pleasure that
I introduce Vivian Haun, who is a Senior Policy Attorney at Disability
Rights, California, and she's going to
speak for the rest of the authors on the
paper. Welcome. I'm just so grateful to be here with all of you
today and especially grateful to the committee at UCSF that invited
Disability Rights, California to talk
about this brief. They were kind enough
to see this report that we put out about a year
ago in January of 2023. What we'll be doing today is talking a little
bit about some of the points that we discussed in that brief from a year ago. Then in the latter
half of this session, we will start to
talk about some of the ways we've been building
on our work from last year and really extending it and
ways that we are starting to pivot and new things that are on the horizon that
we think will be really promising in this space. But first, let's talk
about some of the things that we brought forward in
our brief from last year. Just as a point of
brief background. In our system for about
well over 10 years now, after a lot of advocacy and
concern from many advocates, individuals, families,
from across the system, the legislature
started requiring regional centers to annually publish data on their websites with regards to their
service expenditures. Essentially, this is
data that tells us how much that regional center is spending on the people
that they serve. You can find this
data on the website for every regional
center all 21 of them. This data is updated annually, and it has broken down
in many different ways. In particular, it's
dis-aggregated by race and ethnicity in
some other categories. Unfortunately, every year since this data has
started to be published, it has shown some significant
and persistent disparities across all 21 regional centers. You can see here in this
graphic that there are some, I think, major differences. This is from the last year of data that was available prior to the start
of the pandemic. You can see, for instance,
that on average, regional centers tend to
spend roughly about half of the amount that they spend on white individuals
that they serve. That number has been pretty
consistent over the years. In this figure, which was produced by the
legislative analyst's office, this is another way we can think about disparities in
service expenditures. If you look at this graph here another way to think
about that graph is to think about a way to compare what regional centers spend on average on what we
call a consumer. That's somebody that's
served by a regional center. Here, we can see that
in 2021-'22 that regional spenders
spent roughly $0.56 on services for Hispanic or
Latinx individual for every dollar they
spent on services for an individual that
they serve who is white. We can see that that difference
has only widened over the last five years or
so or 8-10 years or so, despite over $100 million
state funding to date in various equity
initiatives that have been launched by the Department of
Developmental Services. It's certainly not for
a lack of attention or a lack of trying or
lack of investment. But for various reasons, the spending
disparities have proven to be very deeply entrenched and difficult to
move the needle on. What are some of the initiatives that have
been tried in our space to crack this nut and get at these racial
disparities in spending? These boxes are just
a brief summary of the key initiatives that have been launched and
implemented in our system. You'll see some things like
implicit bias training, pay differentials for staff
who are multilingual. Lower caseloads at
some regional centers for service coordinators
who are serving families who speak languages other than English and who typically
have children or individuals that have
gotten very few or even no services from
the regional center. But I think the primary or
signature initiatives from the Department for
Developmental Services over the last 10 years or so have been investments in what they call service
access and equity grants, as well as other regional
center-driven projects with regard to language access
and cultural competency. As we'll see, those
projects, by and large, have focused on a
particular type of intervention or policy level. For the most part, there's certainly been
variation and diversity in approaches that have
been taken for sure. But a significant majority
of projects in this space have focused on
helping people better understand and therefore better navigate the existing
regional center system. In this slide, we
see just a sampling. I'm sorry about the tiny font, but this is just to
illustrate the types of service navigation and language accessibility
specialist projects that different regional
centers have created, which we very much appreciate. I think everyone here
understands and completely agrees with how essential
those types of positions. Sometimes they're
called promoters. They could be community
health workers. They're so essential. But have they been enough? Have they really
accomplished the purpose or the intent of helping people to better navigate the system, and therefore access
the services they need? Unfortunately, we
have not really seen those projects really move the needle in a significant way despite a lot of good
intent and effort. You can see a chart
that shows how racial disparities
in spending have only widened in the
regional center system. You can see from the chart
that while per capita expenditures have risen for everyone in the last five years, they have increased much more
for those who are white. Well, the average
amount of spending on services has remained
relatively flat, particularly for individuals
who are Hispanic or Latinx, as well as for people
identified as other. Then the question becomes, why have these spending
disparities been so entrenched and so immovable. A few of the things
we talked about in our 2023 report are
basically summarized here. One of them, the box on
the right is very similar. Some of those recommendations
are very similar to what our wonderful colleague Magana just shared in her session, which has to do with
full partnership with those most affected
at every level. That means really listening and engaging people with
lived experience, people with intellectual and
developmental disabilities served by regional centers, putting them at the center, and involving them in
identifying problems and co-designing potential
solutions to those problems from
the very beginning. She already covered that far
better than I could have. But what I want to
talk more about today is shifting our focus from just helping people
navigate the system as it exists to transforming
that system. Another way I like
to think about this is to think about
the metaphor of a jungle. If we think about our system as a jungle
and unfortunately, there are many people, especially people of
color and families from under served communities who tell us when
they call us at DRC. How they experience
the various barriers and all of the different hoops, they feel like they have to jump through to be
able to understand the system and then get what
they need in a timely way. If we think of our
system as a jungle that is dense, thick, tangled, full of trees, very hard for anyone to figure out how
to make it through. There are two different ways we could approach that problem. We could continue to
provide more maps, come up with better signage to help people find their
way through that jungle. Provide some guides to help people navigate
through the jungle, even as that jungle
continues to grow in size and complexity,
and density. But we would say more
efficient way of addressing that
problem would be to just build a road
through the jungle. Cut through the density
and the complexity. Instead of focusing so much
on helping individuals find their own individual
way through the system, find a way to make the system easier to go right
through by building a paved path and just making it easier for everyone
at a systems level. In our brief, and you can
see a link to it down there, and you will hopefully get
these materials later. This is just a summary
of what we mean when we talk about going from
navigation to transformation. It's about moving
from a lens that feels too many
families of color. They will often tell
us that it feels like the system is
implicitly blaming them, even if that's no one's intent, how it can sometimes or
often come across is. It's not us, it's you. If you just understood the
way the system works better, then it wouldn't be as hard and you would have a much better
time accessing services. That can feel really isolating and depressing
and overwhelming. In our brief, we talk
about different ways that the system can do more to own and acknowledge how its own structures may
contribute to the problem. Acknowledging how often people
of color, unfortunately, have serious issues and difficulty trusting in government
systems and being very hesitant and sometimes
resistant or scared to share data broadly
for various reasons. We talk about the need
for people to feel safe to share and to build
trust in the system. Again, moving from expecting disabled people
and their families who already have so
much to take care of. Moving from expecting them to navigate across system silos on their own and moving to
shifting that burden. A burden of coordinating
needs across departments, off of individuals, and onto, the system onto government structures
that do that across the board for everyone. In this past year or so, since we published
our brief originally, we have started to
do even more work in this area to really dig
into what else could account for differences in expenditures by
race and ethnicity. One possible place to start and something we've
started examining more closely are differences in how expenditures are approved at
the regional center level. Here, I have included
some sample language. It says service standards, and this reflects something that not everyone may
be as keyed into, which is that regional
centers under the Lanman Act, have the ability to set their own service
standards or what we call riches of
service policies. As it says here, each regional center develops its own service
standard policy that's unique to the community
that it serves, and those standards get
reviewed and approved by DS. How does this play out? If you look at the right
side of this slide, you'll see a graph. If you look at the center
graph that says PA, that refers to a service
known as personal assistance. What this bar graph represents is it tells us some
expenditure data about the average amount that is spent on personal
assistance for children, people between the
ages of 0-17 years old who live at home
with their families. You'll see that in 2022/2023, expenditures per
capita were somewhere between $15,000-$20,000
depending on your race or ethnic background. However, on the left-hand side, you will see the
service policy on personal assistance for
Harbor Regional Center, which is located in
the South Bay area. You'll notice that they
have a description of what personal assistance
does and the way that the care and the things that are included in
personal assistance. But you'll also notice that it says the need for personal
assistance is seen as a typical parental
responsibility and only under exceptional circumstances
would this regional center authorize personal
assistance for a child. For us, this raised
some questions. Do children at this
regional center have meaningful access to personal assistance
services compared to children at other
regional centers? If they don't have the
same access or access, that's meaningful
compared to children who just happen to live
elsewhere in the state, what communities does this
affect most, and how? These are the questions
that we have started asking ourselves and asking others in the system
more broadly. This is just one example, but does it make sense for
personal assistance to be considered a parent's obligation in one area of the state, but a regional center's
obligation in another? Why do regional centers get to decide when an entire
service type for a child is a parent's
responsibility as opposed to a regional
center responsibility? if the point of local
control is to be more responsive to the needs of the local community
and tailor policies and practices to what
that community needs. How well are those needs being reflected in purchase of
service policies that determine which services and how services are approved and
funded at the individual level? Now in 2024, we have started to do some more
thinking and work about, what service expenditure
levels really tell us, because we've been
thinking a lot more about racial and ethnic
disparities and equity. What that really means? You'll recall this
figure from earlier in the presentation,
which, again, so much of the focus and the
discourse in our system over the last decade or so has been on disparities in spending. That's what we've
been talking about. But what does this data tell us about how well people's needs
are actually being met? A service expenditure levels even what we should be looking at when we think about whether or not there's
racial equity in our system. Does more spending necessarily equate to better results
or outcomes for people? Or does it tell us more
about the volume of services provided and the
cost of those services? Why have per capita
expenditure levels been our system's benchmark for so many years for
measuring equity? I personally would
say because honestly, it is the best most comprehensive
data point we currently have in the regional center
system, unfortunately. We don't have and have not had the quality
and degree of data that we think we really
need to be able to tell whether or not there's
true equity in our system. By equity, we mean is everybody getting what they
need to actually and meaningfully address what they want and need
for their lives. People with IDD deserve
to have three things. The supports and services
that they need to meet their own individual needs and live lives of their own design, and achieve the outcomes that they identify for themselves, and they should get
those supports and services when they need them. For a very long time, we have not had really any good data on what supports and services
people actually need, how effective those supports and services are at
addressing those needs, and the degree to which
people are getting those supports in
a timely manner. I'll talk about
these three things. How does our system currently
assess individuals areas of functional need
and/or their need for very specific
types of services? Right now, and for many years, we have not had any consistent or
comprehensive assessment tools for this purpose. There are some homegrown tools, or rubrics, or checklists, or criteria that
are used here and there by different
regional centers, but none of them are
comprehensive or take a comprehensive
look at identifying all of a person's
potential needs. There's certainly nothing
that's consistently used across the state or across
regional centers , and most importantly, there's no assessment
tool that has been validated to do any
of those things, so I think that's one reason
why we actually don't have very high quality data about
what people actually need. We also don't have
really good data about the quality of
services and the degree to which particular
services effectively help people achieve the outcomes they want for their lives. That has to do with
the fact that just nationally, and
broadly speaking, there are a few good
outcome measures for home and community
based services, especially for
people with IDD and especially at the
individual level. There are some state or
system level measures that are out there and have been out there
and that are used, but not very much for outcomes
at the individual level. Finally, how does
our system currently track timeliness of
access to services? Are people getting
the things that they need when they need them? Well, currently, we do not have very good data on that either because even though
we have a lot of data on what we call
service authorization, in our system, services are
not considered authorized. They're not entered
into our systems as being authorized until after both a service is
approved for someone and an available
provider is located. That means that we don't
have good data points, if you think about
two points in time. The only data point that we have that's entered is
service authorization, which happens both after
identification of the need for it and we have an available
provider in hand. We don't have this
data point here, which is when did that
service approval happen? So we don't have good data about the lag in time that may exist between the day that a service was determined
to be necessary, and the day that the service
was technically authorized, which occurs only when
we've been able to locate an available
provider for that service. If we don't have
data about that gap, how big those gaps are, who has gaps in timeliness, we're also just not really
able to tell at a high level how well or how
well we are meeting this particular
measure on timeliness. This brings us to 2024. Some of you may have
heard about this, but in case you had not heard, in January of 2024 as part of Governor Newsom's
budget proposal for the next fiscal year. CalHHS announced the launch of a master plan for
developmental services and many of you know that our state has had
different master plans, the master plan for aging and many other cross sector
initiatives that really focus the entire state on the needs of a particular
population across sectors. At DRC, we think
that this could be an incredible opportunity
and a rare opportunity to finally start drilling
down into some of the questions and data
gaps that I've just been talking about because we would suggest that
the true measure of equity would be to have a good sense of the degree to
which those things are met. Are people getting what they
need, when they need it? Then disaggregating that
data by race and ethnicity. There should not be
a humongous gap by race in that data
and if there is, that's what we think would
be a far better measure of racial equity in our system, or inequity in our
system than just looking at service
expenditures alone. This Master Plan for
developmental services. If you want to learn
more about it, you can go to the CalHH
website about it. It is set to launch with its first meeting sometime
later this month. A stakeholder working
group has been appointed and what we know is that it
will go for about a year. We've been told that some master plan
recommendations will come out with stakeholder input
sometime in March of 2025, so a year from now. We really hope that this can be an effective vehicle for identifying some
of these issues. I'm sorry, it's half an hour. These are the types
of things that we hope can be addressed as part of that master
plan discussion. We see these as some of
the potential barriers or actual barriers that people have in accessing the
supports that they need. Thank you for your time
and your patience. In the breakout session, my colleagues, Will, and Sabrina and I
are looking forward to continuing this conversation.
Thank you so much. Thank you, Vivian. We do
have some questions for you. There has been discussion in
the Q&A about the challenges that families have because their case managers lack
knowledge and training, and so their case
managers don't know what to offer them
or what's available. Is there anything
about standardizing the training for regional center case managers or the tools that are available to them and a resource map that's
available to them regionally? That is such a good
question and proposal. Some of you may know or have
heard that there have been proposals and actually
now requirements, new requirements and statute
as of last year for DDS and regional centers to start
standardizing more and more so to have a standardized intake
process, for example. To have a standardized
IPP template. But this particular thing that you've asked
about Clarissa, that is not one of the
things that has been required of regional
center statewide yet. I completely agree that is a huge gap and something that is sorely lacking and sorely needed because as
the gatekeeper, if you're gatekeeper
who helps direct you and connect you to services, is not fully informed or
in some cases misinformed. Then quality counseling about your options and
about how your needs can be met is not happening. Yes, that is something that has come to our
attention as well and something that we
have started to have more conversations
about and bring to the attention of
the legislature, and hopefully the administration through the Master Plan process. It's an excellent point. Other questions are about
pay for service providers. There's going to be turnover and it's going to be
difficult to access services if there isn't enough pay for the
service providers? Yes, it is a tremendous concern that we have at DRC2
and many folks do. If you are not familiar, one of the other things that the governor proposed
in his January budget, was a delay in what
was to have been the third and final phase of a phased in set of rate
increases for providers. That was supposed to have
kicked in July of this year. Now the proposal is to delay
that until July of 2025. That has caused a lot of dismay and concern
in our system. Those rates, quite honestly, I think many of us feel that
they're not enough as it is. There is wide
variation or has been wide variation in pay
rates around the state, even within the same
type of provider. It's a major concern, and that's something that I
think the legislature and advocates and the administration have been very focused on. This spring, I wish I had
an answer for you, I don't. Other than to note
that it's a hot topic, and for those of you who may be interested in engaging on it, if you look around,
it's, I think, easy to find ways to engage
or to learn more about it. One thought that I had.
California has a system, taking three steps back about how do we get to the system
that's so intractable. Our system is based on individual needs and based on a negotiation with
authority figures, basically, and certain people and cultures are more
comfortable with that than others and some people have you know,
information is power. Some people have access
to more information. I know that the
Latinx community, 30% don't have Internet
access, for example. It's pretty hard to have information if you
don't have access to the Internet and to go into those meetings with
equal standing. I'm wondering whether
some of these I'm just from my own
experience noticing that people of color or
not getting what I know they deserve and trying to help them advocate
through the system, you know, some of the
things that I've noticed is that some of these attempts to improve things maybe
making them worse. For example, I'm working
with somebody who is a monolingual Chinese person who has a monolingual
Chinese caseworker, and he doesn't want to
shame his caseworker, and he's not comfortable
arguing with authority figures, and neither is his caseworker. By having somebody who
speaks the same language and comes from the same
culture, I'm like, the White people would have
fired that caseworker, or would have gone to his boss, but you don't want to do that
for understandable reasons, but it's actually exacerbating the issue instead of
making it better. What you just said strikes
very close to home for me as the child of immigrants, and the sister of someone who has autism has been served
by the regional center for most of his life that is very
familiar, unfortunately. It affects so many people, these kinds of, like, cultural issues and of course, the regional center, I'm sure. It was well intended, and
I'm sure that it's been good in various ways to match that individual with
a service coordinator who comes from or shares
the same background, but you're right,
sometimes that can compound certain
barriers or problems. I'll address that in one way. It absolutely needs attention. I was very interested
to hear about what states like North Carolina
have done in this space. In North Carolina,
my understanding is that to address this problem, they have started
to do things like, and I'm not sure how to
describe this, but I guess, it would be called
outreach or education to aim specifically
at supporting particular communities to
letting them know what's possible addressing
the fact that many communities
do feel like they want to do things on their own. They have to do
everything themselves. They keep it all in the family, and you just don't ask others
who aren't related to you, especially the government
to do stuff for you, like, take care of
people in your own home. That's just what you do. That's what I'm expected
to do for my parents as the eldest daughter in a
Taiwanese American family. The problem, of course,
is that writ large. That can lead to tremendous
caregiver burnout, where people, especially
women of color, end up giving and giving and doing everything
themselves until one day they collapse or
get sick or pass away, and nothing has been
put in place for the adult child and that creates
its own set of problems. They recognize that
at the state level, their state Medicaid agency
and have started to do outreach designed to try to counteract or
better balance that. I think that's a very
promising model. The other thing I would
say is that generally, one of the most common barriers we hear about at DRC
is people saying, we don't even know what's
out there or what's available and when we talk
to our service coordinators, they're not that helpful. They give us a list or
they mention some things, but we still don't
really understand. It's not sufficient. I think there's a
lot that California needs to learn about how to do outreach and education in a more meaningful way that goes beyond
just handing people a list or having a
service creator rattle off some suggestions in
10 minutes in a meeting, but concerted, I think, peer based outreach
by partnering with community based
organizations starting very early over time. Thank you so much.
