(air whooshing)
(mouse clicking)
(gentle music)
- My name's Aaron Carruthers.
I am the executive director
of the State Council on
Developmental Disabilities.
I'm from our headquarters
office in Sacramento,
but we have regional offices.
There's one here in Oakland.
And how many folks have worked
with our fantastic leader in
that office, Sheraden Nicholau?
- Woo!
- Yay!
- Yeah.
(audience applauds)
She's a fantastic resource
to this community, to all of you,
and she is a fantastic resource
for us at the State Council.
Has every presenter had
this slide, disclosures?
I have nothing to disclose.
It's very official, it's very important,
and I was instructed,
I must have this slide.
So there it is.
I have nothing financial to disclose
but I do have some other disclosures.
One, my slides are not in your booklet.
I got them a little bit late
so they weren't ready for printing,
even though Galen did her best
to make sure I got them in time
so you'd have them,
which means you just have to listen
and focus up here and enjoy.
Next disclosure, I try
to make my presentations
to be as accessible as possible.
I will already point out
this presentation is non-accessible.
Just look, everybody is
expected to sit in a seat,
face this direction,
be relatively quiet.
You were told to be quiet.
(audience chuckles)
- Sorry!
- Otherwise it wouldn't,
Geri was like, "We're
not going any further
"unless you're quiet."
So full disclosure, in a
sense of accessibility,
do what you need to do to be comfortable,
to be able to absorb this information
in the best way that works for you.
If that means moving,
standing in a corner,
stretching, stimming, vocalizing,
whatever it is you need to do,
please feel free to do that.
This is an accessible presentation.
Next disclosure is that
what I'm about to talk
about is very high level.
In fact, each of you in this room
probably knows more
about one of these topics
than I will talk about today.
The purpose of that is so
I can cover a lot of areas.
I'm not giving you the depth and totality
of everything that I know
today on each of these topics.
But each topic,
we probably could have
an entire conference
devoted to each one.
And in fact, if I do my job very well,
by the end of 45 minutes,
you just may be exhausted
by what I've covered.
(audience member chuckles)
So thank you for that.
And those are my disclosures.
Though, I formally don't
have anything to disclose.
First is the overview.
The purpose of this presentation
is to describe the major changes
that are in motion inside and outside
of the developmental
disability services system.
So I come from Sacramento.
I have a Sacramento perspective,
I focus on the statewide issues,
and there are federal and state
policies that are underway
that's gonna reshape the
service delivery system
for the next generation or two to come.
That's pretty exciting.
We're part of that.
You're living that.
You're living that.
Even as these changes are underway,
there's other aspects that
still don't meet people's needs.
So we'll talk about both of those.
This is for continuing education credits.
You have learning objectives.
First objective is to know
who is the State Council on
Developmental Disabilities.
Why do we exist and what do we do?
Objective 2 are the system
changes that I talked about.
By the end, you'll hopefully be able
to identify at least three
changes currently reshaping
the development
disabilities service system.
And Objective 3 is Living a Full Life,
identify at least three
needs people with IDD have
outside of the service delivery system.
So objective number one,
the State Council on
Developmental Disabilities.
We are an entity that exist
in federal law and state law.
We exist in the federal DD Act
and we exist in the Lanterman Act.
We are structured,
we are a state department
but we are independent.
We're independent of any other
state department, like DDS,
we're independent of any agency,
like Health and Human Services agency,
and we are funded by Congress.
We are a line item.
All councils throughout the country
and all the territories
are line item and funded through Congress.
We're part of a sister
network of 56 councils.
I know you're already thinking,
Aaron, 56 state councils?
There's only 50 councils.
It's because we also exist
in all of the territories too,
so Guam, Puerto Rico, Mariana Islands.
There's a council like ours
throughout all of these
states and territories.
We have a very unique statutory authority
and that is to advocate.
It's kind of a cool authority.
We can advocate,
other state departments can't advocate.
The governor can advocate,
state departments can't advocate.
We can advocate.
We build capacity and we change systems.
Those are our three functions:
advocate, build capacity, change systems.
We're the only state entity that exist
with a specific charge
to change the systems.
So we like that.
Again, as I said before,
we have a headquarters
office in Sacramento,
we have a regional presence.
There's 12 regional offices,
so every part of the state is covered
by one of the regional offices.
Your local one is in Oakland.
We do this work by training people
with intellectual and
developmental disabilities
and their family members
to be their own advocates.
The more we train,
the more we amplify, multiply,
those who are able to do the advocacy.
So we start there.
We also do direct advocacy ourselves
on important issues.
The scope of our work,
thank you, Geri, for mentioning,
last year, our work
impacted 1.9 million people.
Couple of specific numbers
in there is that we,
20,000 people came to
our trainings last year.
We have trainings on a number of,
I think it was 51 different topics
we do trainings on.
Collectively, 20,000
people attended those.
You're actually one of the trainings.
As I'm talking, I'll be
looking around the room.
You'll think I'm trying
to make eye contact
and be a good presenter,
I'm actually just getting
an accurate headcount.
(audience laughs)
No, just kidding.
In addition, we provide
technical assistance
to 10,000 people.
Technical assistance is,
I'm a single person and I have a question.
Let me go to my local State
Council office and ask them,
here's the problem I'm having,
what do you do think?
We're system navigators.
We help people work through
the different parts of the system,
largely where the parts of
the system are breaking down.
So that was Objective 1.
Good job, you got through it
very quickly, very easily.
Congratulations.
Do you want a breather?
No, okay, we'll keep going.
Objective 2, systems change.
The first phenomenon underway
that is gonna reshape our
service delivery system
for the next generation
is that the people
entering regional centers
are entering at a rate five times faster
than the growth of
California's population.
So California grows at about 1% per year
and recently, individuals
with intellectual
and development disabilities
have been coming to regional centers
at a rate of 5% per year.
Last year, or this year,
in January, the governor
proposed his budget,
it begins in July,
and he proposed $9.2 billion
for the Department of
Developmental Services.
This was a $1 billion increase
over the amount that was
spent in the prior year.
$1 billion is a huge number.
But when it's really only
going for population growth
and keeping up with state minimum wages,
it doesn't go very far.
I don't know how much DDS
talked about that this morning
but the rate of people
coming into the system,
I know they told you there
was 386,000 individuals
they expect to serve
through the 21 independent
regional centers,
but it results in 50 people per day
coming to a regional center.
That's more than two
people per regional center
knocking on the door and saying,
I'm new and I am entitled
to these services.
The system can't quite figure out
how to keep up with this pace of change.
So this is the first factor
that is gonna be reshaping
the service delivery system
for the next generation.
The next one after that
is the Home and Community-Based
Services Final Rule.
This set of regulations was issued
by the Centers for Medicare
and Medicaid Services, CMS,
in 2014 and it's to be
implemented by 2022.
Eight years, that's a long time
to get something done, right?
We should pretty far down the way
to implementing this rule, right?
I see a head shaking in the front of no.
I agree.
A head shaking in the front of no.
What this Final Rule says
is that to get the federal
funding under the HCBS waiver,
which is the Medicaid waiver
that funds regional center services,
the state must be providing services
in the most integrated
setting as appropriate.
So the setting should be
selected by individuals
from options that include
non-disability specific settings.
It's integrated and supports access
to the greater community.
And if we're not able
to get this done by 2022
then there's $2.8 billion at risk
for not meeting the federal rule.
Every single system,
every single service and provider
needs to do a self-assessment to say,
here's my best understanding
of the settings rule
and here's my best understanding
of whether or not I meet that.
How many providers in the room today?
Keep your hands up.
Keep your hands up
if you have actually received this survey.
Oh, that's pretty telling, isn't it?
That's a best barometer
of where we are in
implementation of this program.
So those providers haven't even received
the survey to fill out
to state whether or not my
services are HCBS-compliant.
This is a lot of work
to do in two short years
with the scope of the services
throughout California.
And there's a lot at risk
for not getting it right.
There are very good
reasons to get it right.
These settings are the promise
of the Lanterman Act from 50 years ago.
It's the promise that people
will be served in the community
in integrated settings,
and yet, we're very slowly doing that.
It was only last month
that California shut down
the last of its developmental centers.
So as we all know,
that California has a history
of institutionalization.
130, 140 years ago,
very well-intentioned, smart people,
much like all of us here today,
by the way, we are the well-intentioned,
smart people of our time.
(audience chuckles)
I know, kind of scary.
You thought it was somebody else.
It's not, it's you.
It's us, it's me.
The group of us from 130, 140 years ago,
decided, what's the
best, most humane thing
we should do for people
with intellectual and
developmental disabilities?
Build big, giant stone gray
houses in Sonoma County
and lock people away there forever.
It's taken us a long time
to become more enlightened
and some pushes from
the federal government,
but the state has finally closed
those developmental centers.
- [Audience Member] Yay!
- That's a yay.
(audience applauds)
A few remain for people
with forensic commitments,
so coming through the
criminal justice system,
but this is part of the change.
It's part of the movement.
It's part of the promise of Olmstead.
It's part of the promise
of the federal Developmental
Disabilities Act.
It's part of the promise
of the Lanterman Act.
And we have two short
years to make it happen.
So this is gonna be
significant in reshaping,
in changing the system
for a generation to come.
Beyond that, beyond the
extra billion dollars
that the governor has proposed
just to keep up with caseload,
keep up with caseload
and keep up with minimum wage,
as we move people out
of developmental centers
into the community,
then-Governor Brown began a task force
under then-Secretary Dooley
to look at how do we make it successful
for re-entry in the community?
That task force pretty quickly,
the providers in the task force said,
"We're already stretched.
"We're already at capacity.
"We're already scrambling
just to pay bills."
The rates don't cover the costs.
The rates are inconsistent.
The rates are inconsistent from provider
within regional centers,
they're inconsistent
across regional centers.
I could be a single provider
with multiple services
and receive different rates
for the same services.
It's just a mess that's
been built over time.
To successfully move people
out of developmental centers,
you have to fortify and shore up
the currently existing system
and the rates structures.
So three years ago,
the administration put aside $3 million
to conduct what was called the rate study.
This was given by the Department
of Developmental Services
to Burns & Associates.
They went through and looked
at every aspect of costs
for what it cost to provide the services.
Show of hands again for
those providers in the room.
Keep your hands up if
you remember this survey.
Over there, one hand up.
What was the experience of
filling out that survey?
(audience member speaks faintly)
Grueling is a good word for it.
(audience member speaks faintly)
But hopeful, that's good.
Yeah, grueling but hopeful, that's good.
It was complex, it was tedious.
It was, oh my goodness,
to get it done.
But got it done
and they produced very
comprehensive, thorough,
it's 22 pages of detailed charts
looking at every single service,
every single code.
What are the costs that go into it?
Varying it by region, okay?
If the cost of living is higher there,
let's give them a differential.
If they're in rural areas
and they have to travel more to get there,
let's give them a differential.
It was thoughtful.
It also came to a bottom-line
regarding sticker shock,
which was their conclusion,
was the system currently functioning
is underfunded by $1.8 billion.
The $1.8 billion does
not factor in the billion
the governor just put into it.
That's just keeping pace.
The $1.8 billion is an addition
to get the system fully funded
for how it is operating now.
They've done a few changes.
That 1.8 is actually now at $1.4 billion.
So $400 million is progress.
That was supposed to be a little funny
but that's okay.
Maybe it was just funny to me.
(Aaron chuckles)
That providers are struggling so intensely
to keep the doors open,
to keep the services going
that are functioning under complex rules
and rate structures,
and the attempt to look at that,
to make it uniform,
to make it transparent,
to make it sustainable,
and to create quality outcomes
is actually a big focus
in Sacramento right now.
Next item that will reshape
the service delivery system
for the next generation to come
is the Self-Determination Program.
So the Self-Determination is
a separate waiver from CMS
that is independent of the HCBS waiver,
the Home and Community-Based
Services waiver.
It ends up being a different way
that regional center clients
can get services from the regional center.
It provides regional
centers and their families
more flexibility, control
in their services.
They don't have to use vendored providers
to receive the services.
They will work with an
independent facilitator,
a fiscal management services,
to manage the money
and they're more in control,
rather than the service coordinator,
in coming up with,
how do we get the,
how do I get the services for what I need?
(audience member speaks faintly)
So the statement was, "Is it going,"
you still have to jump
through a lot of hoops.
You still have to use
generic services like IHSS,
and that's not really helpful.
Correct.
These still have the CMS rules that apply
where the regional center in this program
becomes the payer of last resort,
but there's a bit more flexibility
in choosing who your
providers are gonna be.
So this program was
approved by CMS in 2018.
It was based on a pilot
program that ran for 20 years
and was hugely successful.
So they are phasing in this program
with an initial 2,500 individuals
whose names were drawn
kind of out of a lottery.
They did an orientation.
They said, "I saw your
orientation, I'm interested.
"Put my name in it,"
and then people's names were drawn
by regional center, by race,
by disability, by age.
And that was in October of 2018.
It's now March of 2020
and out of those 2,500 people,
there's 150 who are
actually in the program.
So a lot of time is going by
and people are finding,
and there's a lot of complexities.
Liz said, there's a lot of barriers
for getting involved in it.
Melissa's a member
of the Statewide Self-Determination
Advisory Committee
where she comes to Sacramento
to work with representatives
from all regional centers on barriers.
The group is working on a
paper that has 10 barriers,
and even more important
than naming barriers
is identifying solutions
to get through those barriers.
So they're working hard
to help what is an important policy change
be able to live up to its potential.
Self-determination and the idea of it
is critical to the Council's mission.
It's literally in our mission statement
to support people to lead
self-determined lives.
That's certainly this formal program,
but self-determined lives
is in many, many different ways too.
So we wanna see this succeed.
It's supposed to be expanded.
While the law currently
states that come June of 2021,
it'll be expanded and eligible
to every single regional center client
who chooses this voluntary program.
So in summary, about the system changes,
huge system changes that are underway,
the system's growing five times faster
than the state's population.
The Home and Community-Based
Settings Final Rule
says that services have to be delivered
in community integrated settings,
including options that
aren't disability-specific.
As you saw from this room,
no provider has received a survey
to do a self-statement
that they are meeting HCBS rules
and yet we have to be compliant by 2022.
Regional center provider rates
are $1.8 billion underfunded,
or 1.4, 'cause $400 million is progress.
And the Self-Determination Program
is reshaping how people
can choose their services.
So the next learning objective
is about living a full life.
Outside of the regional center system,
the regional center system
gets a lot of attention
but at the State Council,
our mission is the entire continuum
of someone's existence
and what does it mean to live,
community integration oftentimes happens
outside the regional center system.
We are currently in the process
of developing our next
five-year state plan.
We operate on a five-year system.
And to do that,
we start off with you
and we ask you, the community,
what is it that you'd
like the State Council
to work on over the next five years?
If any of you received that survey,
took that survey,
thank you very much for doing that.
We have received 5,000 responses
and the number one response from people
with intellectual and
developmental disabilities
is, I want you, the State Council,
to work on housing.
10 years ago when we took this,
the number one answer was,
I want you to work on
generic services, benefits.
Number one priority for
me as a person with an IDD
is I wanna make sure you,
that I am able to keep my
benefits and don't lose them.
Five years later when we took the survey,
the number one answer was employment.
It's not just benefits
that are important to me,
it's having a full meaningful existence,
and I see that through employment.
Now it's a trend toward housing.
So it's a really interesting snapshot
that shows how quickly views
of one's life is changing.
What is it that I view
for myself as possible?
What do families view for me as possible?
It's changing in a very quick way
that we can measure.
So the number one answer is housing.
No, you don't have to do a show of hands,
you can just answer quietly for yourself,
but if anybody here
is experiencing their
own housing challenges.
Housing is a crisis throughout the state.
Every area that I go into says,
"You think they have it bad?
"We have it bad."
I think the Bay Area may be able
to actually claim authority
to that statement,
but whether it's rural or urban, suburban,
every single part of
the state is suffering.
Interestingly, housing for people
with intellectual and
developmental disabilities
is a crisis within a crisis
and it's a bit silent.
That's because there are 100,000
adult regional center clients
who are living with family members.
So the promise of the Lanterman Act
is really being delivered
on the backs of families.
In the next 10 years,
there's a question of, what happens?
Really, a crisis of housing instability
with aging family members.
There's really only 11% of
people with disabilities,
we looked at regional center clients
and we looked at people receiving IHSS,
and a total of 11% are
living independently.
So where do people wanna live?
Every time I talk about this,
someone says, "Aaron,
people wanna live at home."
Absolutely, no doubt,
but if they don't wanna live at home,
what are their options?
We surveyed the state and
we've looked at national data
and it's approximately half of adults
with intellectual and
developmental disabilities
who are living at home say,
"Living at home is nice,
"I think I'd like my own place."
The numbers for family members,
there's actually about a quarter,
both statewide and nationally,
the numbers match each other,
who say, "Yes, my loved
one's living at home
"and I think it'd be nice for them,
"for all of us,
"if they had their own place."
So if we took,
so that's half of adults
with intellectual and
developmental disabilities
and a quarter of family members.
If we went really conservative
and just said 10% of adults
currently living at home
could be off on their own,
and we looked at just 10%,
a third of the people were
living in congregate settings,
what we would see
is that there are 20,000
housing units that are needed.
20,000 is a significant number
and is more than, really,
what the system is even
contemplating right now.
Most of the conversations around housing
are going to homelessness.
It should, that's important.
What I'm talking about here is separate,
apart and distinct from
homelessness crisis
that we're facing.
But we're talking in
conversation with the Legislature
about ways to address this.
The next objective about living
a full life is employment.
And the employment rate of
regional center clients is 13.6%.
That's not the unemployment rate.
That's the employment rate.
So after a decade of economic recovery,
we've seen almost zero impact.
No movement in lines of how many people,
or regional center clients, are employed.
When we look a little bit
deeper into those numbers,
the numbers are even more shocking.
There's about 4,500 individuals
who are regional center clients,
who are adults,
who are working in competitive
integrated employment.
So this is largely considered
as real work for real pay.
After that is about 5,400 individuals
who are in group employment,
and after that is 67,000 people
who are tagged as being employed,
a regional center client
who's being employed,
but they're actually in a day program,
a day program lookalike,
or in subminimum wage.
It's a problem that in California
we still find it acceptable
to pay people less than their human worth
and less than their human value
and that's what subminimum wage is.
So the next piece of what people want
outside of the service delivery system
is meaningful experience
through employment,
meaningful contribution,
meaningful purpose.
The next piece after that is safety.
Safety's coming in a
number of different ways.
There's some expected and
there's some unexpected,
there's some loud and there's some quiet.
Public safety power shutoffs
is effecting this area.
I know that it effects Santa Cruz area,
it effects the Marin area.
That, the utilities,
and PG&E, specifically,
has a public safety problem
by their aging infrastructure
and their solution to it is
just turn off the electricity
when the winds become too high
and the air becomes too dry,
creates another public safety problem,
and that's the impact on
people with disabilities
without having electricity
for extended periods of time.
There's a medical baseline program
that people can sign up for.
If not having electricity for two hours
will create a medical problem for you,
you can be put on a special list
and you're bypassed or
get special services.
That doesn't help when the minimum time
to turn the power back on
after a public safety power shutoff
is 24 to 48 hours.
So again, they've created a solution
that's gonna cause a different
public safety problem.
Another piece around
safety that's of concern
is interactions with law enforcement.
The State Council has staff
who are certified to be POST trainers.
So POST is the Peace
Officer Training Standards,
the official entity
that does accreditation
for law enforcement
curriculum and trainers.
We go in and we have staff
who are POST-certified
and we go in and work directly
with law enforcement officers,
law enforcement training officers,
on the disability curriculum.
Additionally, we're looking for ways
that we can train people with disabilities
and family members
on interactions with law enforcement.
Each time there is a tragedy,
and it is a gross tragedy,
it brings up the issue again and again.
Another piece that's sort of silent,
I talked about the loud ones,
I talked about the silent ones,
sexual assault against people
with intellectual and
developmental disabilities.
The statistics are,
and it's hard to know
any statistics, really,
but only about 3% of these
assaults are reported.
Abuse, neglect, crime,
people with intellectual and
developmental disabilities
are four to 10 times
more likely to be victims
of abuse, neglect, and crime.
Something that's not
really thought of too often
as a safety issue is dental care.
But for those who've been in dental crisis
understand how this
becomes a safety issue.
Very interestingly, the
California Dental Association
reached out to us recently and said,
"Our dentists are tired
"of not being able to provide the care
"they wanna provide to
people with intellectual
"and developmental disabilities."
So we're excited that the dentists
have prioritized this as a problem
and we're optimistic
about what we can actually
accomplish together
to create some progress in this area.
Safety is a fantastic topic
because it's always changing
and something that should
be up on this PowerPoint
but it's not up on the PowerPoint
is COVID-19, or the coronavirus.
So on the drive here,
I was on the phone
with the Governor's Office
of Emergency Services
as that office was
leading a statewide call
among disability advocates
about needs and next steps.
We said what's needed is guidelines,
is guidance specific to our community.
When they think of us,
they think of it broader
than just intellectual and
developmental disabilities,
broader out to the access
and functional needs.
Individual's access and functional needs
is the operating definition they use.
The Department of Public Health
is working on that guidance
and they said it should be
released within a few days.
We're happy to get that to you when it is.
We asked about the impact of
the governor's executive order.
Does it then free up dollars?
We're hearing that there are providers
who are holding fundraisers
to try to provide supplies
of gloves, masks, sanitizer,
and as we talked about with
the rate structure crisis,
there isn't a lot of flexibility
in the funding for them
when crisis happens.
So does the governor's
emergency declaration
then free up and make flexibile
other funding sources?
They don't have an answer
but they're gonna look into that.
We also asked the question
regarding the million masks.
So the governor announced
the million masks
and our question was, where are they
and how are they gonna be distributed?
The details on that are still not known.
So these are all under development
and by asking the questions,
hopefully we'll get answers sooner.
So again, just to summarize
the elements for living a full life,
that people have been
coming to the council about
and prioritizing,
is housing, it's employment, it's safety,
and under safety, there
are a number of topics.
So summarizing, again,
learning objective number one
is that you know the
role of the State Council
and how we function and what we do.
Next is to be able to name
at least three changes currently underway
that reshapes the developmental
disabilities system
for a generation or two to come.
And after that, learning
objective number three
is identify at least three needs
that people with intellectual
and developmental disabilities
have expressed that they'd like
that's served outside the
service delivery system.
So thank you very much for your patience,
and with that, I'm happy to
take any questions or comments.
(audience applauds)
