Legislature(2017 - 2018)CAPITOL 106
02/01/2018 03:00 PM House HEALTH & SOCIAL SERVICES
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| Audio | Topic |
|---|---|
| Start | |
| Presentation: 2018 Update Governor's Council on Disabilities & Special Education | |
| Adjourn |
* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
+ teleconferenced
= bill was previously heard/scheduled
ALASKA STATE LEGISLATURE
HOUSE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE
February 1, 2018
3:05 p.m.
MEMBERS PRESENT
Representative Ivy Spohnholz, Chair
Representative Bryce Edgmon, Vice Chair
Representative Sam Kito
Representative Geran Tarr
Representative Jennifer Johnston
Representative Colleen Sullivan-Leonard
Representative Dan Saddler (alternate)
MEMBERS ABSENT
Representative David Eastman
Representative Matt Claman (alternate)
COMMITTEE CALENDAR
PRESENTATION: 2018 UPDATE GOVERNOR'S COUNCIL ON DISABILITIES &
SPECIAL EDUCATION
- HEARD
PREVIOUS COMMITTEE ACTION
No previous action to record
WITNESS REGISTER
PATRICK REINHART, Executive Director
Governor's Council on Disabilities & Special Education
Anchorage, Alaska
POSITION STATEMENT: Presented a PowerPoint titled "2018
Update."
MAGGIE WINSTON, Chair
Governor's Council on Disabilities & Special Education
Kenai, Alaska
POSITION STATEMENT: Presented a PowerPoint titled "2018
Update."
JEANNE GERHARDT-CYRUS, Chair
FASD Workgroup
Kiana, Alaska
POSITION STATEMENT: Presented a PowerPoint titled "2018
Update."
ACTION NARRATIVE
3:05:38 PM
CHAIR IVY SPOHNHOLZ called the House Health and Social Services
Standing Committee meeting to order at 3:05 p.m.
Representatives Spohnholz, Tarr, Sullivan-Leonard, Johnston,
Kito, and Saddler (alternate) were present at the call to order.
Representative Edgmon arrived as the meeting was in progress.
^Presentation: 2018 Update Governor's Council on Disabilities &
Special Education
Presentation: 2018 Update Governor's Council
on Disabilities & Special Education
3:06:04 PM
CHAIR SPOHNHOLZ announced that the only order of business would
be a PowerPoint presentation by the Governor's Council on
Disabilities & Special Education.
3:06:35 PM
PATRICK REINHART, Executive Director, Governor's Council on
Disabilities & Special Education, presented a PowerPoint titled
"2018 Update" and he discussed slide 1, "Council Roles:" He
reported that the council had multiple roles in state
government, listing their work as the Developmental Disabilities
Council, the State Interagency Coordinating Council (ICC) for
infants and toddlers with disabilities, the Beneficiary Advisory
Board to the Alaska Mental Health Trust Authority, the Governing
Body of the Special Education Service Agency (SESA), and the
Special Education Advisory Panel (SEAP) for the state on behalf
of the Department of Education and Early Development. He
pointed out that the role and responsibility of the council
covered multiple state departments. He moved on to slide 2,
"State 5 - Year Plan:" and reported that they had just finished
a five-year plan with input from all over the state. He noted
that most research was done by survey. He declared that they
had arrived at five different goal areas: empowered to live and
thrive in communities; competitively employed in integrated
settings; skills for education success and independence; receive
appropriate services and supports; and improved quality of life.
He stated that all the objectives and activities for the council
would fall into these five areas.
3:10:26 PM
MR. REINHART reported that he would offer an overview of two
bills that the council was developing. He introduced the first
of these two bills, slide 3, "Developmental Disability (DD)
Shared Vision:"
3:11:09 PM
MAGGIE WINSTON, Chair, Governor's Council on Disabilities &
Special Education, spoke about slide 3, and reported that the
council was working on this shared vision for developmental
disabilities and the State of Alaska. She explained that the
project teams were meeting with state agencies, service
providers, families, care coordinators, and individuals to
provide better services for individuals with developmental
disabilities. She stated that the goal was to make services
more person centered, so that people were in control of the
services they received in an integrated home and community
setting of their choosing.
3:12:18 PM
MS. WINSTON declared that person centered care allowed an
individual to add more meaning to their life. She shared a
personal anecdote about her life and the services which she
received. She acknowledged that, given the current budget
climate, there would be a difference in opinion for how these
services should be provided. She directed attention to slide 4,
"Moving Forward Together:" and stated that the goal was to set a
sustainable future in statute that would enable people to look
forward to the future and be safe in knowing that the services
would be provided.
CHAIR SPOHNHOLZ asked about the cut in her personal services
from 24 hours each day, seven days a week, to 35 hours each
week.
MS. WINSTON, in response, explained that this cut was currently
in the appeals process, and that if this happened, she would
need to move from her home with her two teenage children into a
nursing facility, which was more expensive than her current home
support.
3:15:06 PM
MR. REINHART spoke about the graphic on slide 4, and the savings
for this move toward home and community-based services from
institutional care, which amounted to about one-third the cost.
He reported that this had been the chosen direction since the
mid-1990s.
3:16:41 PM
REPRESENTATIVE JOHNSTON reflected that 6 - 8 percent of the
population were the big cost drivers for health care, and she
asked about the percentage of home-based costs over a ten-year
period.
3:17:35 PM
MR. REINHART replied that, although he did not have a ten-year
projection, the department had compared each of the four types
of waiver costs and that the average cost for a developmental
disability waiver was about $89,000 per person, with some people
costing more and some people costing less.
REPRESENTATIVE JOHNSTON asked for further information.
3:19:03 PM
REPRESENTATIVE KITO asked what situation prompted the proposed
change from 24-hour care to 35 hours of care each week.
MS. WINSTON explained that there had been changes in certain
convoluted regulations for group home services, and that she had
opted to choose different supported living services for more
freedom and independence.
REPRESENTATIVE KITO asked if this was a situation that was
happening to other people with developmental disabilities.
MS. WINSTON expressed her agreement, stating that it was
happening to many individuals.
3:20:20 PM
REPRESENTATIVE SULLIVAN-LEONARD asked if this was a state change
or a Medicaid change.
MS. WINSTON replied that it was a state change.
3:20:47 PM
MR. REINHART moved on to slide 5, "DD Shared Vision Bill," and
explained that it would put this in statute, so that all future
administrations would look at this when reviewing the home and
community-based services waiver programs. He reported that they
were working on some draft aspirational language which could be
added to the statute, "a lens that we just want to put over the
top of all these services" which would lead to "meaningful lives
for citizens with disabilities."
3:21:51 PM
JEANNE GERHARDT-CYRUS, Chair, FASD Workgroup, addressed slide 6,
"Supported Decision Making:" and explained that it referred to a
third opportunity for people who, in the past, had been
automatically granted either a full or limited guardian. She
said that supported decision making went along with the vision
for developmentally disabled to have more control over their
lives and be able to choose where and how they wanted to live.
She declared that this was a civil rights issue. She
acknowledged that, although some people may need full
guardianship, not everyone did. She pointed out that although
people may need help with some things, this would allow them the
right to maintain decision making power over their own lives.
She moved on to slide 7, "Supported Decision Making Bill," and
stated that this bill was very close to being presented to the
legislature. She reported that the recommended ratio of
guardian to ward was 1 to 20, and in Alaska, as this ratio was 1
to 109, the opportunity to do any planning or discussion with
the individual was "pretty limited if non-existent." She
declared that supported decision making would provide equal
access for the individual and allow them to establish a team of
people they wanted to have discussion and input for life
decisions. She opined that there had been positive support for
similar legislation in other states.
MR. REINHART added that they supported the increase for the
Office of Public Advocacy which had been included in the
governor's budget.
3:25:06 PM
MS. GERHARDT-CYRUS pointed out that she was the Chair of the
FASD [Fetal Alcohol Spectrum Disorders] work group. She
presented slide 8, "FASD 5 - Year Plan:" and reported that the
workplan and the vision had now been finalized. She stated that
the goal was for Alaska to become an FASD informed state.
MS. GERHARDT-CYRUS moved on to slide 9, "FASD 5 - Year Plan:"
and explained that FASD was a range of disabilities and did not
affect everyone together, as it depended on the time and amount
of exposure, as well as genetic differences. She stated that a
goal was to reduce the incidence of alcohol exposed pregnancies,
pointing out that this was 100 percent preventable, providing
there were the supports and services necessary for women and
families to assist with healthy pregnancies "because it's not
just a woman's issue." She declared that it was important to
address the stigma associated with FASD for birth moms and
individuals. She listed the need to reduce the co-occurrence of
childhood trauma and FASD by increasing support for families.
She pointed out that many people with FASD did not qualify for
services in the developmental disabilities program and would not
qualify for a waiver unless they had a diagnosis outlined in the
federal regulations. She reported that these people could have
chronic failure as they may not respond to typical strategies at
home and in school. She reiterated that reducing the co-
occurrence of childhood trauma and FASD, addressing FASD
informed care, and advocating for fully funded appropriate
services were all goals. She relayed that five work groups had
been formed, with funding from the Alaska Mental Health Trust
Authority and partnerships with 18 entities. She reported that
there would be quarterly meetings, with a focus on developing
action plans, reviewing finances, and identifying resources for
the top three objectives listed on slide 9. She noted that
behavioral health issues were often a result of chronic failure
co-occurring disorders.
3:31:54 PM
REPRESENTATIVE JOHNSTON stated that, as diagnosis was often a
stigma, families would not allow diagnosis, and asked if that
had been addressed to allow follow through with the remainder of
the goals.
MS. GERHARDT-CYRUS said that it continued to be an issue. She
reported that the All Alaska Pediatric Partnership would conduct
its own developmental screenings for all neuro developmental
issues as early as possible. She opined that this would help
with diagnosis.
3:33:55 PM
REPRESENTATIVE TARR recalled that the state had previously
funded a project for pregnancy tests in bathrooms. She asked if
there was any discussion in the community about the success of
this project, and whether there had been any follow up. She
asked whether this would be a part of any prevention strategy.
MS. GERHARDT-CYRUS replied that, although she was not on the
prevention workgroup, anything that was effective for preventing
alcohol exposed pregnancy was helpful. She shared an anecdote
about five women who had written in with thanks after taking the
test.
3:36:12 PM
REPRESENTATIVE TARR suggested that this could be a lower cost
alternative.
MS. GERHARDT-CYRUS relayed that currently there were not a lot
of asks to the Legislature, although the priority area groups
could bring many ideas forward.
3:37:56 PM
CHAIR SPOHNHOLZ acknowledged the in-depth, comprehensive work
plan addressing FASD by Ms. Gerhardt-Cyrus, and she expressed
her "hope for the future" after reading it. She shared a
personal anecdote about her daughter and the struggles with
testing for FASD.
MS. GERHARDT-CYRUS stated that now was a time for action.
3:40:21 PM
MR. REINHART reported that there was an autism ad hoc group and
shared that the state would now have two pediatric
neurodevelopment specialists, slide 10, "Autism Update:" He
noted that there were 11 rural outreach clinics and that the
Center for Human Development at the University of Alaska had
started Alaska ECHO Autism, which included the expertise from
providers around the country in a video conference format to
deal directly with practitioners and discuss the issues and
problems encountered in diagnosis and service.
3:42:21 PM
MR. REINHART moved on to slide 11, "Autism Update: ABA - EBSDT
Regs," and shared the suggestion that the state adopt
regulations that allowed for applied behavioral analysis, an
evidence-based treatment. He reported that the council reviewed
and commented on the draft regulations and shared that Medicaid
payment for this treatment was getting closer.
3:43:35 PM
MR. REINHART directed attention to slide 12, "Universal
Developmental Screening." He stated that the sooner there was a
diagnosis for young children experiencing developmental
disabilities, the sooner they could get into services.
3:44:54 PM
MS. WINSTON spoke about slide 13, "ABLE Update:" and reported
that the ABLE Act had been passed in August 2016 and the first
accounts had been opened that December. She reported that there
were currently 94 ABLE accounts with quite a bit of funding and
it enabled individuals with disabilities to save for things
related to their disabilities. She shared that the number of
accounts being opened was increasing, and that the outreach
continued through presentations and social media to benefit more
individuals.
MR. REINHART thanked Representative Saddler for his work in
passage of the ABLE Act in Alaska.
3:46:16 PM
MR. REINHART moved on to slide 14, "Employment First Update:"
and shared that the legislation had been aspirational language
in the expectation for employment of individuals with
disabilities. He stated that continued emphasis for expectation
would create a long-term shift in policy and attitude, and that
young people now in school had the expectation for employment.
He pointed to the repeal of sub minimum wage for people with
disabilities. He shared that there was work across many
departments.
3:48:37 PM
REPRESENTATIVE TARR asked about a U.S. Supreme Court case
related to services for children with disabilities in school,
which challenged the Department of Education for definition of
service.
MR. REINHART said that he would research the case.
3:49:43 PM
CHAIR SPOHNHOLZ expressed her excitement with the employment
first update and the progress being made. She declared that we
gained meaning in our lives from our work and, in our culture,
how we work was how we defined ourselves. She emphasized that
it was important to be able to work in a way that provided
meaning in our lives, and she detailed how this developed
happiness, confidence, and respect from adults and peers. She
offered her belief that work gave individuals meaning and focus
in their lives.
3:50:55 PM
ADJOURNMENT
There being no further business before the committee, the House
Health and Social Services Standing Committee meeting was
adjourned at 3:50 p.m.
| Document Name | Date/Time | Subjects |
|---|---|---|
| GCDSE Presentation to House and Senate HSS.pdf |
HHSS 2/1/2018 3:00:00 PM |
Governor's Council on Disabilities and Special Education |