Legislature(2009 - 2010)BUTROVICH 205

02/08/2010 01:30 PM Senate HEALTH & SOCIAL SERVICES


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* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
*+ SCR 12 FETAL ALCOHOL SPECTRUM DISORDERS DAY TELECONFERENCED
Moved SCR 12 Out of Committee
*+ SB 215 PIONEERS HOME RX DRUG BENEFIT TELECONFERENCED
Moved SB 215 Out of Committee
                                                                                                                                
          SCR 12-FETAL ALCOHOL SPECTRUM DISORDERS DAY                                                                       
                                                                                                                                
1:33:46 PM                                                                                                                    
CHAIR DAVIS announced consideration of SCR 12.                                                                                  
                                                                                                                                
SENATOR ELLIS joined the meeting.                                                                                               
                                                                                                                                
1:34:16 PM                                                                                                                    
SENATOR  MEYER,  sponsor of  SCR  12,  said that  this  resolution                                                              
proclaims September  9, 2010 as  Fetal Alcohol Spectrum  Disorders                                                              
(FASD)   Awareness   Day;   FASD   Awareness   Day   is   observed                                                              
internationally  on that  date. This  is a reminder  on the  ninth                                                              
day  of the  ninth month  that  during a  woman's  nine months  of                                                              
pregnancy she should not drink alcohol.                                                                                         
                                                                                                                                
He said Alaska  has the highest  known rate of FASD in  the United                                                              
States.  It is  caused by  prenatal  exposure to  alcohol and  can                                                              
cause   permanent   brain   damage,    birth   defects,   learning                                                              
disabilities, behavioral  problems, and most tragically,  the loss                                                              
of  individual  potential.  That,  he  said,  has  been  the  most                                                              
difficult thing for  him in working with these  children; they try                                                              
as hard as anyone  else, but are frustrated by  the limitations of                                                              
their  condition.  It  is  even   more  frustrating  because  this                                                              
disease is totally preventable.                                                                                                 
                                                                                                                                
SENATOR MEYER continued  to say that the lifetime  cost of medical                                                              
and residential services  for 15 children born in  Alaska with FAS                                                              
can be  up to $47  million according to  the 2005 update  prepared                                                              
by  McDowell Group  on the  economic  costs of  alcohol and  other                                                              
drugs.                                                                                                                          
                                                                                                                                
1:36:32 PM                                                                                                                    
In conclusion,  he reiterated  that this  is totally  preventable.                                                              
He referred to  the strides that have been made  through education                                                              
about  the dangers  of drinking  and driving  and of tobacco  use;                                                              
the more people  are educated about FASD, the  greater the chances                                                              
of turning the tide on this problem as well.                                                                                    
                                                                                                                                
1:37:23 PM                                                                                                                    
SENATOR  DYSON  said  he  suspects it  was  during  Chair  Davis's                                                              
professional  career when  a medical professional  in the  Seattle                                                              
area  recognized a  remarkable  number of  persons  coming out  of                                                              
Alaska  who had  certain distinctive  facial  features in  common,                                                              
and  started the  research  that finally  identified  what is  now                                                              
known  as Fetal  Alcohol Spectrum  Disorder. Alaska  has not  only                                                              
been hugely  impacted, but has played  a significant role  in that                                                              
research, leading  the nation in  identifying children  with FASD.                                                              
He stated  that he has  friends who are  social workers  and child                                                              
advocates  working in  western Alaska,  who think  there are  some                                                              
communities  in   which  as  much  as  two-thirds   of  the  adult                                                              
population  has  prenatal  alcohol  poisoning  issues.  For  those                                                              
affected  people who  do not  have  the identifying  physiological                                                              
features,  there  are still  neurological  patterns  that are  not                                                              
there  and   never  will  be   there.  These  people   have  great                                                              
difficulty  in reasoning  between  cause  and effect;  they  often                                                              
have  problems with  empathy; they  can't  take a  long view  when                                                              
making decisions;  they are easily  victimized and will  require a                                                              
great deal of structure all of their lives.                                                                                     
                                                                                                                                
1:40:28 PM                                                                                                                    
SENATOR  DYSON referred  to successes  in the  fight against  FASD                                                              
such as  the bill  that requires  posting warning  signs in  bars,                                                              
and noted that  Alaska now has one  of the better programs  in the                                                              
nation  and is  making  some progress.  He  ended  by saying  that                                                              
Senator  Davis, Senator  Ellis  and others  who  are here  deserve                                                              
credit  for  that.   This  resolution  is  another   step  in  the                                                              
educational progress,  and he said he would be  privileged to move                                                              
this bill.                                                                                                                      
                                                                                                                                
1:42:43 PM                                                                                                                    
JEANNE  GERHARDT-CYRUS, Kiana,  Alaska, said  she is  a parent  to                                                              
children  with  prenatal  alcohol  exposure,  a  professional  who                                                              
conducts  training  in FASD,  a  Parent Training  and  Information                                                              
(PTI) Navigator  with Stone  Soup Group, and  a case  manager with                                                              
Maniilaq Association.  FASD is an issue that  crosses entities; it                                                              
belongs  to all  of us  in every  community.  It impacts  schools,                                                              
corrections, and  behavioral health. It is preventable,  but there                                                              
is no prevention  without intervention. Those who  are affected by                                                              
FASD  now,  need to  get  services  so  they  do not  develop  the                                                              
characteristics that  come from a  poor fit with  the environment.                                                              
Not  everyone who  is affected  has the  physical indicators,  and                                                              
those who  don't look  as if  they have  a disability often  don't                                                              
get the  help they  need to be  successful. A  lot of  people with                                                              
prenatal alcohol  exposure end up in the correctional  system and,                                                              
sadly,  get the 24  hour per  day supervision  and structure  they                                                              
need  in  a  correctional  facility.  That  support  needs  to  be                                                              
provided in the  community where people can become  viable members                                                              
and make a contribution to community life.                                                                                      
                                                                                                                                
1:45:57 PM                                                                                                                    
MS.  GERHARDT-CYRUS concluded  that most  of these  people do  not                                                              
qualify for developmental  disability services, although  the FASD                                                              
waiver  program  will help  a  great deal.  As  a  youth she  once                                                              
worked with  told her,  she said,  they shouldn't  have to  get in                                                              
trouble to get services.                                                                                                        
                                                                                                                                
1:46:49 PM                                                                                                                    
BARBARA  KNAPP, Manager,  Treatment &  Recovery Section,  Division                                                              
of Behavioral Health,  Juneau, Alaska, spoke on  behalf of Melissa                                                              
Stone,  Director,  and  the  Division  of  Behavioral  Health,  in                                                              
support  of all  of  the families  who  struggle  on a  day-to-day                                                              
basis with  Fetal Alcohol Spectrum  Disorder. They support  SCR 12                                                              
proclaiming this day FASD Awareness Day.                                                                                        
                                                                                                                                
1:47:59 PM                                                                                                                    
SHANNON  CROSS, Mental  Health Clinician,  Division of  Behavioral                                                              
Health, Anchorage, Alaska, said she also supports SCR 12.                                                                       
                                                                                                                                
1:48:26 PM                                                                                                                    
SENATOR DYSON  asked how  Alaska is doing  on the availability  of                                                              
diagnostic  capacity   for  parents  and  in  the   Department  of                                                              
Corrections population.                                                                                                         
                                                                                                                                
MS. KNAPP  answered  that she cannot  speak to  the Department  of                                                              
Corrections,  but the  Department  of Health  and Social  Services                                                              
(DHSS) has  diagnostic teams located  all around the  state, where                                                              
families can  go through a  battery of testing with  professionals                                                              
who can  make that  diagnosis. They  are working  on getting  more                                                              
services out to those families.                                                                                                 
                                                                                                                                
She  said she  and  Shannon Cross  represent  what  is called  the                                                              
Residential  Psychiatric   Treatment  Center/FASD   Waiver,  which                                                              
provides home  and community-based  services to children  who live                                                              
in their  home communities  instead of  receiving treatment  in an                                                              
institution.                                                                                                                    
                                                                                                                                
1:50:11 PM                                                                                                                    
TRAVIS  HEDWIG,  Project  Coordinator,  Family  to  Family  Health                                                              
Information  Center, Stone  Soup Group; PHD  Candidate in  Medical                                                              
Anthropology,  Anchorage, Alaska,  said  he has  been involved  in                                                              
disability  organizations in Alaska  for the  last decade  and has                                                              
most  recently   become  interested  in  Fetal   Alcohol  Spectrum                                                              
Disorder.  He supports  any and  all  intervention and  prevention                                                              
services for this  population in Alaska. He knows  first-hand that                                                              
diagnostic  accessibility   is  a   problem  here,  but   that  is                                                              
changing; there  is a new  diagnostic team  that has opened  up at                                                              
Assets Inc. Prior  to that, there was only one  diagnostic team in                                                              
Anchorage,  affiliated  with  Southcentral   Foundation  and  only                                                              
available   to   beneficiaries,  so   it   is  a   very   positive                                                              
development. He reiterated his support for SCR 12.                                                                              
                                                                                                                                
1:52:01 PM                                                                                                                    
KATE BURKHART,  Executive Director,  Advisory Board  on Alcoholism                                                              
and  Drug  Abuse  and the  Alaska  Mental  Health  Board,  Juneau,                                                              
Alaska, said she  had not intended to testify, but  has the answer                                                              
to  Senator Dyson's  question.  She said  they  have been  working                                                              
with  the  Department  of  Health  and  Social  Services  and  the                                                              
Prevention  and Early  Intervention  unit within  the Division  of                                                              
Behavioral  Health, because  they  have recommended  some  funding                                                              
for services.  The  most recent  data they have  received  is that                                                              
there   are   active   diagnostic   clinics   in   the   following                                                              
communities:                                                                                                                    
                                                                                                                                
     Bethel - YKHC                                                                                                              
     Sitka - SEARCH                                                                                                             
     Kenai - Frontier Community Services                                                                                        
     Juneau - Central Council of Tlingit and Haida Indians                                                                      
     Fairbanks - Southcentral Foundation                                                                                        
     Palmer - Mat-Su Family Services                                                                                            
     Anchorage - Assets Inc.                                                                                                    
                                                                                                                                
Over  the past  three  years,  these  clinics have  been  actively                                                              
diagnosing  two to  three people  per  month in  each clinic  that                                                              
meets  about  once per  month.  So  for  example, in  Bethel  they                                                              
diagnosed 16 individuals  in 2009, which may not  sound like many,                                                              
but  it  is  a very  intensive  all-day  process.  In  Sitka  they                                                              
diagnosed 10  in 2009; in  Kenai they diagnosed  34 last  year; in                                                              
Juneau  they 23  diagnoses in  2009 and  11 by  February of  2010.                                                              
Fairbanks  diagnosed  22  last   year  and  16  so  far  in  2010.                                                              
Southcentral is  by far the  most active, with  35 in 2009  and 52                                                              
so far in  2010. She added  that, after receiving a  diagnosis, if                                                              
people  don't  have   access  to  the  services   they  need,  the                                                              
diagnosis  is not going  to be  of any  help. That  is one  of the                                                              
benefits  of  having  an  awareness   day  like  this  one,  which                                                              
addresses the opportunity  to educate the public  about the unique                                                              
needs  of individuals  with FASD  and  the services  they need  to                                                              
thrive.                                                                                                                         
                                                                                                                                
MS.  BURKHART  thanked   Senator  Meyer  and  the   committee  for                                                              
bringing attention to this issue.                                                                                               
                                                                                                                                
1:55:12 PM                                                                                                                    
SENATOR  DYSON  commented  that   he  appreciates  Ms.  Burkhart's                                                              
testimony, but she  is wrong to say that knowing  the diagnosis is                                                              
not helpful. For  people who are affected, just knowing  it is not                                                              
their fault  is very  helpful, and  there is  a lot of  literature                                                              
available now  that friends  and families can  access to  find the                                                              
resources they need to help children.                                                                                           
                                                                                                                                
1:56:15 PM                                                                                                                    
KATE BURKHEART  thanked  him for  pointing that  out; she  did not                                                              
mean to  minimize in any  way that it  is important for  people to                                                              
understand it is  a medical issue and an issue  of disability, not                                                              
one of  blame or fault.  She admitted that  she did  mis-speak and                                                              
said  she meant  to convey  that  they have  heard public  comment                                                              
from around  the state expressing  frustration from  educators and                                                              
family members about the supportive services that are needed.                                                                   
                                                                                                                                
1:56:43 PM                                                                                                                    
MICHAEL  BALDWIN, representing  himself,  Anchorage, Alaska,  said                                                              
he has worked as  a behavioral health clinician over  the past two                                                              
decades  in  a  number  of  different   settings  and  with  those                                                              
affected  by  prenatal  alcohol  exposure.  He  is  thankful  that                                                              
Senator  Meyer  has  proposed  this  resolution.  As  others  have                                                              
testified,  it is important  to keep  this in people's  awareness.                                                              
Echoing Ms. Gearhardt-Cyrus's  comments, he said,  the impact goes                                                              
far  beyond  the  affected  individuals,  affecting  many  of  our                                                              
systems   and  communities   across  the   state  at   significant                                                              
emotional and financial cost.                                                                                                   
                                                                                                                                
1:58:57 PM                                                                                                                    
CHAIR DAVIS closed public testimony.                                                                                            
                                                                                                                                
SENATOR THOMAS joined the committee.                                                                                            
                                                                                                                                
1:59:40 PM                                                                                                                    
SENATOR  DYSON  moved  to  report   SCR  12  from  committee  with                                                              
individual  recommendations  and  attached  zero  fiscal  note(s).                                                              
There  being no objection,  the  motion carried  and SCR 12  moved                                                              
from the committee.                                                                                                             
                                                                                                                                

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