Legislature(2017 - 2018)CAPITOL 106

02/02/2017 03:00 PM HEALTH & SOCIAL SERVICES

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Audio Topic
03:02:41 PM Start
03:03:25 PM Presentation: Autism & Fasd
03:35:07 PM Adjourn
* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
+ Presentation: FASD & Autism Disability Support TELECONFERENCED
Initiatives by the Governor's Council on
Disabilities & Special Education
                    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 &                                                                  
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                                                             
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                                                               
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                                                               
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                                                                                                                    
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