Legislature(2017 - 2018)CAPITOL 106
02/02/2017 03:00 PM House HEALTH & SOCIAL SERVICES
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| Audio | Topic |
|---|---|
| Start | |
| Presentation: Autism & Fasd | |
| Adjourn |
* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
+ teleconferenced
= bill was previously heard/scheduled
| + | TELECONFERENCED | ||
ALASKA STATE LEGISLATURE
HOUSE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE
February 2, 2017
3:02 p.m.
MEMBERS PRESENT
Representative Ivy Spohnholz, Chair
Representative Sam Kito
Representative David Eastman
Representative Jennifer Johnston
Representative Colleen Sullivan-Leonard
MEMBERS ABSENT
Representative Bryce Edgmon, Vice Chair
Representative Geran Tarr
Representative Jonathan Kreiss-Tomkins (alternate)
COMMITTEE CALENDAR
PRESENTATION: AUTISM & FASD
- HEARD
PREVIOUS COMMITTEE ACTION
No previous action to record
WITNESS REGISTER
CHRISTIE REINHARDT, Program Coordinator
Governor's Council on Disabilities & Special Education (GCDSE)
Division of Senior and Disabilities Services
Department of Health and Social Services
Anchorage, Alaska
POSITION STATEMENT: Presented a PowerPoint titled "Autism &
FASD."
JEANNE GERHARDT-CYRUS, Chair
FASD Work Group
Kiana, Alaska
POSITION STATEMENT: Testified and answered questions during
FASD presentation.
JILL BURKERT, Chair
Governor's Council on Disabilities & Special Education (GCDSE)
Program Coordinator for Special Education
University of Alaska Southeast
Juneau, Alaska
POSITION STATEMENT: Testified during the PowerPoint
presentation.
ACTION NARRATIVE
3:02:41 PM
CHAIR IVY SPOHNHOLZ called the House Health and Social Services
Standing Committee meeting to order at 3:02 p.m.
Representatives Spohnholz, Sullivan-Leonard, Johnston, and
Eastman were present at the call to order. Representative Kito
arrived as the meeting was in progress.
^Presentation: Autism & FASD
Presentation: Autism & FASD
3:03:25 PM
CHAIR SPOHNHOLZ announced that the only order of business would
be a presentation by the Governor's Council on Disabilities and
Special Education on Autism & FASD.
3:03:51 PM
CHRISTIE REINHARDT, Program Coordinator, Governor's Council on
Disabilities & Special Education (GCDSE), Division of Senior and
Disabilities Services, Department of Health and Social Services,
directed attention to a PowerPoint titled "Autism & FASD" and
introduced slide 2, "Title V Maternal Child Health Program."
She explained that a federal grant had included a survey of more
than 1,000 families raising children with special health care
needs, which had identified three predominant needs of those
families: mental and behavioral challenges, social isolation,
and bullying.
3:06:08 PM
REPRESENTATIVE SULLIVAN-LEONARD asked whether this included the
tracking of cyber bullying.
MS. REINHARDT replied that she would provide more information on
bullying. She continued with slide 3, "What the Council Did,"
and shared that the council collected the information and
developed a five year plan. She relayed that the council
conducted focus groups in 15 communities across Alaska, in which
they asked basic questions about issues, including early
intervention and education, developmental disability services,
employment, childcare, and transportation. She declared that
other issues were consistently raised, including discussion
regarding the huge gaps in service for screening and diagnosis,
particularly around neuro-behavioral disorders or hidden
disabilities. These hidden disabilities included autism, fetal
alcohol spectrum disorder (FASD), and traumatic brain injury, as
it was often not possible to visually detect these disabilities.
She stated that there were gaps in early intervention and
education. She reported that families raising children with
behavioral challenges found it next to impossible to find child
care, which impacted their work. She relayed that another
consistently raised issue was for children at 22 years aging out
of school age services, declaring that there was "a cliff that
those kids just drop off." She allowed that screening and
diagnosis of these neural behavior disorders had improved over
the past 20 years and that, although programs for early
intervention and for schools were developed, there had not been
any catch-up with adult services. She opined that there was not
a social system developed which had anticipated a doubling of
autism diagnoses in this short period of time. She declared
that FASD was prevalent in Alaska.
MS. REINHARDT, in response to Representative Johnston, pointed
out that FASD included the full spectrum of disorders, similar
to any reference for autism to include the full spectrum of
disorders. She stated that, as it was unclear whether FASD was
a behavioral health or a developmental disorder, it was a
question for services, and, in this sense, Alaska was a pioneer
for FASD services. She asked how the services could be
coordinated, offering her belief that this was still emerging.
MS REINHARDT moved on to slide 4, "Disparities," and said that
the council had heard that there were large disparities in
referrals, with inconsistent screenings, screening tools, and
clinic days. She shared that there were not many pediatric
neural developmental specialists, and she listed the many
difficulties for hiring to bridge the gap in services. She
pointed to the disparity for the locations of generalists and
sub-specialists in the state.
3:12:44 PM
MS. REINHARDT moved on to slide 5, "Limited Access," and said
that there was a necessity for evidence based practices,
appropriate education for individuals with brain based
disabilities, and professional training for early educators,
service providers, and first responders. She emphasized that
these support systems needed to be sustainable through insurance
and Medicaid. She declared a need for employment, housing, and
ways to have meaningful lives which included community
engagement instead of isolation.
MS. REINHARDT addressed slide 6, "Prevalence," and pointed out
that FASD was not a low incidence disability, as there were 24 -
48 incidences per thousand. In response to Chair Spohnholz, she
said this national data had just been released, and that she
would supply the actual release data.
REPRESENTATIVE EASTMAN asked why there was such a wide range in
the prevalence.
MS. REINHARDT replied that this was national data and offered
her belief that it was very difficult to obtain firm FASD data,
as different states had different diagnosis screenings. She
noted that it was necessary to have documentation for pre-natal
exposure to drugs or alcohol. She shared that the FAS data from
two years ago had projected 2 - 5 incidences per thousand.
REPRESENTATIVE KITO asked if there was multi-year historic data
to help detect any trends.
MS. REINHARDT replied that she would provide the data. She
shared that there was research being conducted for prevalence
data in Alaska, noting the difficulty to obtain this as there
was not any requirement to screen for FASD.
CHAIR SPOHNHOLZ shared that screening for FASD was very
difficult, as there was a need for the biological mother to
acknowledge alcohol consumption during pregnancy. She shared
that the physiological marker was only a small part of the
diagnosis, and she offered a personal example.
REPRESENTATIVE JOHNSTON added that some rural communities had
school systems which had not even attempted diagnosis.
3:19:37 PM
JEANNE GERHARDT-CYRUS, Chair, FASD Work Group, referred
attention to slide 7, "FASD," and stated that FASD was a medical
diagnosis. She declared that the features were easier to
recognize with a syndrome; whereas with FASD, there may not be
any of these features, hence a much greater challenge. She
declared that the state did not have a good screening tool for
FASD, as FASD was so varied. She shared that she and her
husband were the parents of a number of children with FASD. The
majority of referrals for diagnosis of FASD came through the
Office of Children's Services (OCS), as there was more access.
She opined that the stigma with FASD was very real and should be
addressed. She pointed out that although alcoholism was
recognized as a disease, there was still a stigma for FASD. She
reported that many of the children were first diagnosed with
FASD while in the foster care system when their behaviors were
first recognized. She shared that although there were several
diagnostic teams across Alaska, some were consistent while
others varied in diagnoses. She stated that FASD children were
often seen in emergency rooms, corrections, and residential
treatment. She declared the need for a sustainable
infrastructure to provide the necessary range of services for
all ages. She explained that often for kids with FASD the issue
was that they appear competent, and therefore would not qualify
for developmental services, although there was a developmental
disability. Their behaviors were often assumed to be malicious,
resulting in mis-diagnosis, and subsequently, FASD can be
completely missed. She declared that the State of Alaska was
the only state with FASD listed in the educational regulations,
and the only state which recognized the role of nurse
practitioners for assisting with diagnosis, making the state a
pioneer in the field. She offered her personal experiences with
FASD.
3:28:04 PM
JILL BURKERT, Chair, Governor's Council on Disabilities &
Special Education (GCDSE), Program Coordinator for Special
Education, University of Alaska Southeast, directed attention to
slide 8, "Autism," and speaking about the prevalence data, she
noted a similarity to FASD of issues with inconsistent screening
and identification. She stated that autism was first identified
and included in the Individuals with Disabilities Education Act
(IDEA) in 1990, and the Centers for Disease Control and
Prevention (CDC) prevalence data was 1 in 1,000. She reported
that three years prior, the prevalence data was 1 in 200,
whereas today the prevalence data was 1 in 68, consistent with
the State of Alaska prevalence data. She referenced the data
for FY2016 on the Department of Education and Early Development
website which listed 18,390 special education students in the
state, of whom 1,335 were identified as having autism. She
suggested that some of this data should be more closely
evaluated as there were many small school districts with fewer
than five students, which may not have identified or reported
students with autism. She reiterated the difficulty for
determining the number of students although, she acknowledged
there had been more effort to identify younger children with
autism, ages zero to three. She pointed out that this self-
report questionnaire was more of a screening device. She
reported that due to a lack of qualified personnel it was often
necessary to fly out of Alaska to achieve a diagnosis, as
without a diagnosis, it was difficult to develop a treatment
plan.
3:32:19 PM
MS. REINHARDT concluded by sharing that the Governor's Council
on Disabilities & Special Education had two committees working
to ensure that efforts around autism and FASD were not siloed,
but were coordinated efforts with Public Health, Behavioral
Health, Education, Early Intervention, Human Development,
service providers, and parental support organizations. She
reported that a five-year plan for autism and FASD had been
developed. She offered to provide information for the types of
systemic improvements necessary.
REPRESENTATIVE SULLIVAN-LEONARD reflected on the shortage of
physicians and asked if there was any homegrown concept in
conjunction with the Washington, Wyoming, Alaska, Montana, and
Idaho (WWAMI) Medical Education Program.
MS. REINHARDT replied that there were several models being
reviewed, which included the opportunity for pediatricians and
advanced nurse practitioners in Alaska to receive the
specialized training necessary for diagnosis. She added that
there was the possibility for training family navigators for the
bridge between diagnosis and services. She reported that
current diagnosis in Alaska consisted of two pediatric neuro
developmental specialists from the University of Washington.
3:35:07 PM
ADJOURNMENT
There being no further business before the committee, the House
Health and Social Services Standing Committee meeting was
adjourned at 3:35 p.m.
| Document Name | Date/Time | Subjects |
|---|---|---|
| GCDSE presentation on FASD and Autism.pdf |
HHSS 2/2/2017 3:00:00 PM |
FASD/Autism |