Legislature(2019 - 2020)BUTROVICH 205
02/08/2019 01:30 PM Senate HEALTH & SOCIAL SERVICES
Note: the audio ![]()
and video ![]()
recordings are distinct records and are obtained from different sources. As such there may be key differences between the two. The audio recordings are captured by our records offices as the official record of the meeting and will have more accurate timestamps. Use the icons to switch between them.
| Audio | Topic |
|---|---|
| Start | |
| Presentation: Governor's Council on Disabilities and Special Education | |
| Adjourn |
* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
+ teleconferenced
= bill was previously heard/scheduled
| + | TELECONFERENCED | ||
ALASKA STATE LEGISLATURE
SENATE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE
February 8, 2019
1:31 p.m.
MEMBERS PRESENT
Senator David Wilson, Chair
Senator John Coghill, Vice Chair
Senator Gary Stevens
Senator Cathy Giessel
Senator Tom Begich
MEMBERS ABSENT
All members present
OTHER LEGISLATORS PRESENT
COMMITTEE CALENDAR
PRESENTATION: GOVERNOR'S COUNCIL ON DISABILITIES AND SPECIAL
EDUCATION
- HEARD
PREVIOUS COMMITTEE ACTION
No previous action to record
WITNESS REGISTER
PATRICK REINHART, Executive Director
Governor's Council on Disabilities and Special Education
Anchorage, Alaska
POSITION STATEMENT: Presented on the Governor's Council on
Disabilities and Special Education.
MILLI RYAN, Board Member
Key Coalition of Alaska
Juneau, Alaska
POSITION STATEMENT: Presented on the Key Coalition of Alaska.
MAGGIE WINSTON, Chair
Governor's Council on Disabilities and Special Education
Kenai, Alaska
POSITION STATEMENT: Presented on the Governor's Council on
Disabilities and Special Education.
HANS WAGGONER, representing self
Nikiski, Alaska
POSITION STATEMENT: Testified about family's waitlist
experience.
AMANDA WAGGONER, representing self
Nikiski, Alaska
POSITION STATEMENT: Testified about family's waitlist
experience.
MICHELE GIRAULT, representing self
Anchorage, Alaska
POSITION STATEMENT: Testified about her ward's waitlist
experience.
SYDNEY KREBSBACH, representing self
Juneau, Alaska
POSITION STATEMENT: Testified on the difficulty of finding a job
as someone with autism.
ACTION NARRATIVE
1:31:52 PM
CHAIR DAVID WILSON called the Senate Health and Social Services
Standing Committee meeting to order at 1:31 p.m. Present at the
call to order were Senators Stevens, Coghill, Begich, and Chair
Wilson.
^Presentation: Governor's Council on Disabilities and Special
Education
Presentation: Governor's Council on Disabilities and Special
Education
1:32:18 PM
CHAIR WILSON announced the presentation on the Governor's
Council on Disabilities and Special Education.
1:32:52 PM
PATRICK REINHART, Executive Director, Governor's Council on
Disabilities and Special Education, Anchorage, Alaska, said they
were combining the Governor's Council presentation with the Key
Coalition because they are delivering the same messages. He
reviewed the five roles of the council:
Developmental Disabilities Council (each state has
one)
Special Education Advisory Panel (each state has one)
Interagency Coordinating Council for Infants and
Toddlers with Disabilities (another federal role)
Beneficiary Advisory Board to the Alaska Mental Health
Trust Authority (a state role)
Governing Body of the Special Education Service Agency
(a state role)
1:34:42 PM
MILLI RYAN, Board Member, Key Coalition of Alaska, Juneau,
Alaska, said that the Key Coalition been coming to Juneau for 32
years. It's a grassroots organization comprised of individuals
with intellectual and developmental disabilities, their family
members, service providers, and other advocates. The Key
Coalition has worked with the legislature to do wonderful things
to make life better for people with disabilities. One of the
major things was to close Harborview Developmental Center, which
was Alaska's sole institution for people with disabilities, in
1997 and to establish the groundwork for home and community-
based services. They worked with the Governor's Council to pass
Employment First legislation, autism insurance reform, and the
reuse program of durable medical equipment.
1:35:45 PM
MAGGIE WINSTON, Chair, Governor's Council on Disabilities and
Special Education, Kenai, Alaska, said last year they worked to
pass legislation on the Developmental Disability Shared Vision.
They have been doing amazing work to make sure Alaskans are
living person-directed and person-centered lives, moving away
from the medical model of disabilities to a social model.
Individuals with disabilities are not broken. They are leading
normal lives that have meaning. That is the whole point of the
vision:
Alaskans share a Vision of a flexible system in which each
person directs their own supports, based on their strengths
and abilities, toward a meaningful life in their home,
their job and their community. Our Vision includes
supported families, professional staff and services
available throughout the state now and into the future.
MS. WINSTON said they have six project teams. She co-chairs one
team. This has made the work they do much easier.
MR. REINHART shared an infographic that illustrates Alaska's
developmental disabilities system. They have been changing the
system to a home and community-based system. He pointed out that
the council was awarded an Administration on Community Living
federal grant of $1.96 million over five years to make the
Shared Vision a reality. The council was one of five grantees
out of many applications.
1:38:32 PM
SENATOR BEGICH asked if the grant goes directly to the council.
MR. REINHART answered that they are part of Department of Health
and Social Services (DHSS) and it is a grant to the council.
SENATOR BEGICH asked whether federal money requires
authorization.
MR. REINHART answered yes, and there is enough federal authority
in the budget, so it does not need to be increased.
MS. RYAN said the first priority for the Key Coalition and
council is to reduce the waitlist for developmental disabilities
services. Alaska's home and community-based systems are funded
by Medicaid with 50 percent state funding and 50 percent
federal. Medicaid recognizes that the demand can exceed
resources and allows states to maintain a waitlist for home and
community-based waiver services. For Alaska it only affects
people with intellectual and developmental disabilities. In
Fiscal Year 16, the number of people drawn from the list
annually dropped from 200 to 50.
1:41:00 PM
SENATOR GIESSEL joined the committee.
MS. RYAN said they know that the longer people are on the
waitlist, the costlier it becomes because typically they need
more services. Intellectual and developmental disabilities (IDD)
affect people before age 22. Individuals with IDD require
individualized, comprehensive and life-long services in order to
live successfully in the community.
SENATOR BEGICH asked if there are over 800 people on the
waitlist.
MS. RYAN answered that it is 982. It had been down to 500 before
the number of draws decreased.
MS. RYAN displayed graphs that showed the cost of care with home
and community-based services vs. institutions. It cost $181
million to serve 2,069 individuals with home and community-based
services. In institutions, the cost could be almost $387
million.
MS. RYAN said the waitlist has gone up 447 people in the last
three years. For the last four or five years, they have
submitted cost savings ideas to offset the cost of increasing
the number of draws. This includes technology that reduces the
need for direct staff assistance. Some examples are stove
sensors and remote monitors. They used to have a semi-
independent living option. A change in regulation requires
services to be done on a one-on-one basis, which is much more
expensive. The services are primarily rehabilitation-based,
which means people must learn skills and have goals associated
with that. People can only have so many goals. It can be more
important just to go out in the community and volunteer and do
things like go to church or go to a movie. They have also made
recommendations about supported employment.
1:45:28 PM
MS. RYAN said she is happy to report that Senior and
Disabilities Services (SDS) has said it is working on these
recommendations. Key Coalition believes that implementing these
would allow an increase in the annual draw from the waitlist
from 50 to 100.
MR. REINHART said they had some real-life testimony about what
it was like to be waiting for services.
1:46:34 PM
HANS WAGGONER, representing self, Nikiski, Alaska, said he and
wife Amanda have an 18-year-old daughter, who is nonverbal, not
potty-trained, and severely autistic. A behaviorist has told
them she is in the top one percent of the hardest in the state
to take care of. They signed up for services before they moved
and four years later, they still have no services
1:46:58 PM
AMANDA WAGGONER, representing self, Nikiski, Alaska, said her
daughter is regressing because she hasn't been able to go out
into the community. They have two children in their early
twenties. One stopped college and one moved from New Jersey to
help with the family because they can't work. They are doing 24-
hour care. The older kids are watching her while they testify in
Juneau.
MS. WAGGONER said they have to take shifts to care for her. They
are burned out.
MR. WAGGONER said they have polycarbonate windows so she doesn't
break them.
MS. WAGGONER said it has all been family and community support
in Nikiski. It is all on their shoulders. They don't know what
to do. They don't think they will ever get that little bit of
extra help so they can work and their kids can go back to
college.
MR. WAGGONER said his parents have given everything, but they
are getting older. Family and extended family have been under so
much stress.
MS. WAGGONER said they would be more useful to society if they
had some help.
SENATOR BEGICH asked to confirm that their daughter has been on
the waiting list four years.
MR. WAGGONER responded that they had signed her up about eight
different times. It gets lost in the system every time.
SENATOR BEGICH asked if she is on the waiting list now.
MR. WAGGONER said he believed so.
SENATOR BEGICH asked whether she would be included if the draw
increased to 100.
MR. WAGGONER said she should be.
MS. WAGGONER said she is one of the most extreme cases.
SENATOR BEGICH asked what they would do if she doesn't come off
the waiting list.
MR. WAGGONER answered, "Just keep trying to survive. Go to the
food bank and just scrape by any way we can." He said they have
caretaker burnout. This is their first two-day break from their
daughter in ten years.
MS. WAGGONER said that's why they were there. They have a big
support system, but they are not the people who can sign the
paperwork to get them help.
1:50:58 PM
MICHELE GIRAULT, representing self, Anchorage, Alaska,
introduced Carrie Carson, someone she's been friends with for
almost forty years. After Carrie's parents passed on, she and
her husband became Carrie's legal guardians. Carrie is on the
waitlist. With Medicaid reform, SB 74, there was an impetus to
change the services for those who had been on grant services. In
Alaska, people get qualified to have developmental disabilities
services. For a number of years, she received basic supports.
Carrie is a skilled artist and participated in Hope Studios in
Anchorage. With the transition of grant services to ISWs
(Individualized Support Waiver), the expectation was those on
grant services would seamlessly transition to the ISW. That did
not happen. As of December 31, a number of people were just
dropped from services. Carrie is the face of the waitlist. They
are there to advocate for a path for those who had services for
many years. She gave an example of another person who was
dropped from all services. Alaska is better than that. When they
process the budget that would be coming out, she wanted to alert
and educate them that there are faces behind the waitlist and
people who cannot wait any longer. Carrie has a life to lead.
She and her husband were told that if they kicked her out, she
would score higher on the waitlist draw. That is not an option.
They will be there for her, but Carrie needs to live her own
life.
1:53:59 PM
SENATOR COGHILL asked whether the issues with the transition to
ISWs were qualification changes, a funding switch, or
bureaucratic paperwork issue.
MR. REINHART responded a little of all those things. They
supported the intention of taking grant-funded services to a
Medicaid waiver. A lot of them helped SDS design that waiver. It
took longer than they ever thought it would, so the grant funds
were extended. Getting people to switch from a grant-funded
program to Medicaid was probably more complicated than families
were used to. It just has been slow. The regulations took a
while to get through the process. It has been a combination of a
bunch of different things. A lot of people wouldn't qualify for
Medicaid, so a safety fund was set up for them, but even that
utilization has been a slow transition. People have been dropped
from services and are scrambling for support. It was supposed to
be a smooth transition to ISWs. There were a lot of reasons why
that didn't happen.
MS. RYAN said federal law mandates institutional services for
individuals (if they meet the level of care) and/or families
upon request. The Waggoners could ask for that. They'd rather
keep their daughter at home. But if they wanted to, the state
would have to provide that service. Senior and Disabilities
Services (SDS) administers home and community-based services,
but the funding is in the Medicaid Services budget, which
includes adult dental, behavioral health, and general health.
Those are generally treatment-oriented services. The expectation
is that services will fix people's problems. Home and community-
based services are vastly different from those Medicaid
services. Disabilities will be part of people's lives. They want
to make sure they have the support and flexibility to live their
lives. They feel that people with developmental disabilities
served by SDS require specific and augmented protections.
1:58:41 PM
MS. RYAN said they are recommending that SDS Medicaid funding be
moved out of that Medicaid Services appropriation. Before SDS
was formed, people with intellectual and developmental
disabilities were served through the Division of Mental Health
and Developmental Disabilities, which merged and became SDS.
They had Medicaid funding in their budget at that time, so they
think it would be good to have the funding out of the Medicaid
Services appropriation.
SENATOR COGHILL asked if they had talked to the Mental Health
Trust about that.
MR. REINHART responded that not everyone agrees with this
concept. It is a separate conversation about a proportion of the
budget that is completely different. Not all the advisory boards
are in line with that yet, but they are working on it.
SENATOR COGHILL said that the legislature in many ways looks to
the trust to figure out a pathway forward.
MS. RYAN and MR. REINHART said they would talk to the trust more
about this.
MR. REINHART said they are passionate about jobs. A few years
ago, the council and the Key Coalition worked on passing an
Employment First law. It was aspirational language that if
someone wanted a job, they would find ways of employing people.
In 2016, 73 percent of Alaskans of working age were employed, 49
percent of those with disabilities, but only 27.6 percent of
those with developmental disabilities. They have a long way to
meet the Employment First ideal.
MR. REINHART said they have some ideas for working with the
administration. One is a leadership group from departments
involved with employment to work across silos on the issue of
jobs for their beneficiaries.
MR. REINHART introduced a new member of the council, Sydney
Krebsbach.
2:03:58 PM
SYDNEY KREBSBACH, representing self, Juneau, Alaska, said she is
a young adult with autism on the Governor's Council on
Disabilities and Special Education. She has struggled to find
gainful employment. She has worked seasonal jobs in tourism,
which built skills and increased her social interaction, but had
not found permanent employment, even with the help of REACH and
Division of Vocational Rehabilitation. In the fall of 2016, she
applied for 28 jobs and no one gave her an opportunity to prove
that she can do the work. Her older sister suggested she apply
as a page for the legislature. This is her third year as a
Senate page. This has given her confidence to create new
opportunities. Last year she completed the LEND [Leadership
Education in Neurodevelopmental and related Disabilities]
program through the University of Alaska and she was appointed
to the council. She is there to raise her voice for people with
autism and other disabilities who become frustrated with the job
search. Her message is never give up and persevere. She said she
would speak out until Alaska made the necessary changes so that
they feel they belong in their community and are given
opportunities to contribute and make a positive difference.
SENATOR COGHILL said that it has been a pleasure to work with
her and to see her in this role.
SENATOR BEGICH told her to keep guiding them.
SENATOR GIESSEL said that she a delight every morning when she
comes into her office.
CHAIR WILSON said he wanted to echo his colleagues.
SENATOR COGHILL said the waitlist for developmental disabilities
has plagued them for many years. He asked if people are placed
according to need and services available.
2:08:25 PM
MR. REINHART said it is a weighted waitlist with a scoring
system. People are supposed to rise higher on the list as their
needs rise. Sometimes the draw is more than 50 a year because
people pass away or move. Sixty-three were drawn this last year.
They do ask what happens when a family has good natural
supports. Those are some of the nuances they are trying to
figure out. They have recently talked about the need to look at
the scoring again. Every few years they talk about that. They
have heard about families in crisis who should be at the top of
the list. There are delays for people to become Medicaid
eligible. Becoming eligible is difficult and there is a backlog.
That is another reason why people are waiting for an ISW.
SENATOR COGHILL said the Waggoners up the level of frustration
on their part. His guess is that they are not only ones in such
desperate need. How can that can go unanswered still surprises
him. Thank heaven for family support, but family burnout happens
as well. They have no solution today, but the need is there.
They are looking for solutions also. Resources are scarce. In
Fairbanks he has noticed that the community has stepped up for
transportation. He asked how that looks across Alaska.
MR. REINHART answered that the Governor's Council and many other
groups are involved with the Alaska Mobility Coalition. He is
president of that group. It has been a big issue for so many
years. Their beneficiaries need transportation if they are going
to participate in the community. Fairbanks just went through a
coordinated transportation plan. Anchorage is going through the
same thing. Some of the smaller communities are not getting a
coordinated system. It is catch-as-catch-can many times. There
is not a lot of money for this. They had some support from the
legislature for matching funding in the capital budget the last
few years. He thinks last year it was $500,000 and the year
before it was a $1 million. It gets distributed from small to
larger providers in the hope that they can draw federal funds
for that. There is also some Mental Health Trust funding. The
budget proposal put forth includes $800,000 of general funds
mental health and $350,000 from the Alaska Mental Health Trust.
Public transit often doesn't get a lot of local support. The
Alaska Mobility Coalition is always trying to work with
providers to get the message out about the need. It's not just
people with disabilities but also seniors, a number of folks.
Some systems in the state are awesome. Juneau is a good example
of a really good system.
2:15:23 PM
SENATOR COGHILL said three things are always of benefit to help
people to grow and flourish: transportation, communication, and
a helping hand. Respite care and transportation and
communication capacity are such big deals. Communication is
getting better because of technology, but transportation can
isolate people.
MR. REINHART replied that technology can help with isolation.
Technology is becoming less and less expensive. Things that cost
$10,000 a few years ago are apps that can sometimes be download
for free. As Ms. Ryan mentioned, technology can open up so many
opportunities for people to live more independently and safely
in their homes. This will also be for the aging population.
SENATOR BEGICH asked about the status of respite care.
MS. RYAN said respite services are available through the home
and community-based waiver. It can be written into the plan of
care. It used to be funded through grants, but now is available
through the ISW, so it is not as available as it once was.
SENATOR BEGICH said then those on the waiting list are not
eligible.
MS. RYAN answered yes.
CHAIR WILSON said the Division of Behavioral Health will address
some of these issues, as well as general behavioral health
issues, in a later presentation. He said he has gotten phone
calls every week about the difficulty of navigating to the ISW.
It is a complex system working out the bumps. They don't want
individuals to suffer during this process. They are trying to
work with the administration to lessen the burden on Alaskans.
2:20:43 PM
There being no further business to come before the committee,
Chair Wilson adjourned the Senate Health and Social Services
Standing Committee at 2:20 p.m.
| Document Name | Date/Time | Subjects |
|---|---|---|
| 2019 Council Presentation to House and Senate Final.pptx |
SHSS 2/8/2019 1:30:00 PM |
Governor's Council on Disabilities and Special Education |