Legislature(2011 - 2012)SENATE FINANCE 532

02/23/2012 08:00 AM Senate HEALTH & SOCIAL SERVICES


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08:01:42 AM Start
08:02:54 AM Presentation: Key Campaign
08:40:37 AM Adjourn
* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
Joint w/ House Health & Social Services
Presentation - Key Campaign
                    ALASKA STATE LEGISLATURE                                                                                  
                         JOINT MEETING                                                                                        
      HOUSE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE                                                                     
      SENATE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE                                                                    
                                                                                                                                
                       February 23, 2012                                                                                        
                           8:01 a.m.                                                                                            
                                                                                                                                
MEMBERS PRESENT                                                                                                               
                                                                                                                                
Representative Beth Kerttula                                                                                                    
Representative Bob Miller                                                                                                       
                                                                                                                                
Senator Bettye Davis                                                                                                            
Senator Johnny Ellis                                                                                                            
Senator Dennis Egan                                                                                                             
Senator Fred Dyson                                                                                                              
                                                                                                                                
MEMBERS ABSENT                                                                                                                
                                                                                                                                
Representative Wes Keller, Chair                                                                                                
Representative Alan Dick, Vice Chair                                                                                            
Representative Bob Herron                                                                                                       
Representative Paul Seaton                                                                                                      
Representative Charisse Millett                                                                                                 
                                                                                                                                
Senator Kevin Meyer                                                                                                             
                                                                                                                                
OTHER MEMBERS PRESENT                                                                                                         
                                                                                                                                
Representative Mia Costello                                                                                                     
                                                                                                                                
COMMITTEE CALENDAR                                                                                                            
                                                                                                                                
PRESENTATION:  KEY CAMPAIGN                                                                                                     
                                                                                                                                
     - HEARD                                                                                                                    
                                                                                                                                
PREVIOUS COMMITTEE ACTION                                                                                                     
                                                                                                                                
No previous action to record                                                                                                    
                                                                                                                                
WITNESS REGISTER                                                                                                              
                                                                                                                                
EMILY ENNIS                                                                                                                     
Fairbanks, Alaska                                                                                                               
POSITION   STATEMENT:     Testified  during   the  Key   Campaign                                                             
presentation.                                                                                                                   
                                                                                                                                
MAUREEN PINTNER                                                                                                                 
Anchorage, Alaska                                                                                                               
POSITION   STATEMENT:     Testified  during   the  Key   Campaign                                                             
presentation.                                                                                                                   
                                                                                                                                
LAURIE MATTHEWS                                                                                                                 
Eagle River, Alaska                                                                                                             
POSITION   STATEMENT:     Testified  during   the  Key   Campaign                                                             
presentation.                                                                                                                   
                                                                                                                                
KIM CHAMPNEY                                                                                                                    
Juneau, Alaska                                                                                                                  
POSITION   STATEMENT:     Testified  during   the  Key   Campaign                                                             
presentation.                                                                                                                   
                                                                                                                                
JOE HAYES                                                                                                                       
Fairbanks, Alaska                                                                                                               
POSITION   STATEMENT:     Testified  during   the  Key   Campaign                                                             
presentation.                                                                                                                   
                                                                                                                                
SANDRA HORN                                                                                                                     
Metlakatla, Alaska                                                                                                              
POSITION   STATEMENT:     Testified  during   the  Key   Campaign                                                             
presentation.                                                                                                                   
                                                                                                                                
LAEL FORD                                                                                                                       
Anchorage, Alaska                                                                                                               
POSITION   STATEMENT:     Testified  during   the  Key   Campaign                                                             
presentation.                                                                                                                   
                                                                                                                                
DENNIS HAAS                                                                                                                     
Soldotna, Alaska                                                                                                                
POSITION   STATEMENT:     Testified  during   the  Key   Campaign                                                             
presentation.                                                                                                                   
                                                                                                                                
STEVE LESKO, past President                                                                                                     
Key Coalition of Alaska                                                                                                         
Anchorage, Alaska                                                                                                               
POSITION   STATEMENT:     Testified  during   the  Key   Campaign                                                             
presentation.                                                                                                                   
                                                                                                                                
                                                                                                                                
ACTION NARRATIVE                                                                                                              
                                                                                                                                
8:01:42 AM                                                                                                                    
                                                                                                                                
CHAIR BETTYE DAVIS  called the joint meeting of  the House Health                                                             
and Social Services Standing Committee  and the Senate Health and                                                               
Social  Services  Standing  Committee   to  order  at  8:01  a.m.                                                               
Representative Miller  and Senators  Davis, Egan, and  Dyson were                                                               
present  at  the call  to  order.   Representative  Kerttula  and                                                               
Senator   Ellis  arrived   as  the   meeting  was   in  progress.                                                               
Representative Costello was also in attendance.                                                                                 
                                                                                                                                
^Presentation:  Key Campaign                                                                                                  
                   Presentation: Key Campaign                                                                               
                                                                                                                                
CHAIR DAVIS announced that the only  order of business would be a                                                               
presentation by the Key Campaign.                                                                                               
                                                                                                                                
8:02:54 AM                                                                                                                    
                                                                                                                                
EMILY ENNIS thanked the committee  members for their support, and                                                               
stated that that  this was a momentous day for  the Key Campaign.                                                               
She reported that  it had been 25 years since  the first visit to                                                               
Juneau  by  the  Key  Campaign,  on  behalf  of  individuals  who                                                               
experienced  disabilities and  their families,  who were  waiting                                                               
for needed services.   She emphasized that, in  Alaska, more than                                                               
13,000   children   and   adults  experienced   intellectual   or                                                               
developmental  disability.   She  noted that  one-third of  these                                                               
people  received  services  in  their  home  communities,  either                                                               
funded  by Medicaid  waivers  or state  grant  funds through  the                                                               
Department of Health and Social  Services.  She confirmed that 75                                                               
percent of the nearly 880  individuals remaining on the wait list                                                               
met the  level of care required  for placement in a  nursing home                                                               
or  institution,  and  qualified   for  Medicaid  waivers.    She                                                               
stressed   that  people   with  intellectual   and  developmental                                                               
disabilities  had   many  abilities.    She   declared  that  the                                                               
ambition, the hard  working ethic, the valuing of a  job, and the                                                               
identity of  being an  adult contributing  to society  made these                                                               
individuals  exceptional  employees,   good  citizens,  and  good                                                               
neighbors.   She  confirmed that  the  investment in  a home  and                                                               
community based  service system, rather than  institutional care,                                                               
had made it possible for  "the opportunity for inclusive lives in                                                               
Alaska's villages, towns, and cities."                                                                                          
                                                                                                                                
8:06:25 AM                                                                                                                    
                                                                                                                                
                                                                                                                                
MS. ENNIS  detailed the difficulties these  individuals and their                                                               
families coped with  in waiting for home  and community services,                                                               
which would  allow them  the chance  to work,  and the  chance to                                                               
prove their independence.   She declared that  "life is precious.                                                               
If we can help it, not one moment should be wasted, waiting."                                                                   
                                                                                                                                
8:09:08 AM                                                                                                                    
                                                                                                                                
MAUREEN PINTNER  shared a picture  of her  13 year old  son, Max.                                                               
She declared that  her purpose was to tell her  family story, and                                                               
to  encourage endorsement  for  the funding  of  $650,000 to  the                                                               
Complex Behavior Collaborative  Consultation and Training Program                                                               
(CBC).   She  declared  herself to  be  "a relentless,  volunteer                                                               
parent advocate for  two of my children with  disabilities."  She                                                               
shared  that  Max had  multiple  diagnoses,  which included  high                                                               
functioning autism, severe  executive dysfunction, mood disorder,                                                               
depression,  seizure disorder,  and learning  disabilities.   She                                                               
confirmed  that this  had been  exhausting  on her  family.   She                                                               
shared  the  odyssey  of  admitting   Max  into  the  North  Star                                                               
Behavioral Health  hospital and  the subsequent  realization that                                                               
the  psychiatric  model  at  North  Star  was  not  equipped  for                                                               
children with autism or learning  disabilities.  She relayed that                                                               
North  Star began  an investigation  for an  out-of-state option,                                                               
and had  discharged Max  after three weeks  to a  no-demands home                                                               
bound program,  to wait for  an opening in a  specialized, neuro-                                                               
psychiatry,  out  of   state  residential  psychiatric  treatment                                                               
facility.   She disclosed that  Max sat  at home for  two months,                                                               
heavily medicated, with no school  services.  She shared that her                                                               
other  two  other children  found  this  approach "confusing  and                                                               
unfair."    She  reported  that Alaska  now  has  an  alternative                                                               
program  for  complex behaviors,  the  aforementioned  CBC.   She                                                               
lauded the  program and repeated  her request for funding  to the                                                               
program.                                                                                                                        
                                                                                                                                
8:14:05 AM                                                                                                                    
                                                                                                                                
LAURIE MATTHEWS  shared that  her husband was  in the  Alaska Air                                                               
National Guard, and that she  had two children with disabilities.                                                               
She spoke in support  of the CBC.  She shared  that her five year                                                               
old son,  Cole, loved Star  Wars, Legos, and snuggling  into soft                                                               
piles.  She  explained that he had high  functioning autism, with                                                               
horrific melt  downs several times  each day.  She  described the                                                               
crisis mode this had brought on  to her family, and that during a                                                               
two year  span, her family  had sought help from  a psychologist,                                                               
two  psychiatrists, and  their pediatrician,  with  none able  to                                                               
offer  the   necessary  help.     She  detailed  that   a  recent                                                               
alternative to  keeping children  with extreme  behavior problems                                                               
at home was now available.   She declared her excitement with the                                                               
CBC  program, as  this was  an  option for  children, instead  of                                                               
being placed in  residential treatment.  She said  her family was                                                               
eligible for applied behavior analysis.   She said her son, Cole,                                                               
was progressing,  and learning the  necessary skills  to interact                                                               
appropriately  without "defaulting  into explosive  rages."   She                                                               
urged support for the services of  CBC, and proposed HB 79, which                                                               
would require  insurance coverage for autism  spectrum disorders.                                                               
She declared these to be two critical resources.                                                                                
                                                                                                                                
8:18:04 AM                                                                                                                    
                                                                                                                                
KIM CHAMPNEY  established that  she had  been a  service provider                                                               
for people with disabilities for the  past 14 years, and that she                                                               
was currently  the program  director at REACH,  Inc.   She shared                                                               
the story of  a magnet, which she kept as  a reminder to continue                                                               
to advocate.   She testified in support of the  CBC program.  She                                                               
declared that  providers worked hard to  make communities better,                                                               
and  to make  a difference.   She  shared the  difficulty of  not                                                               
being able  to provide services, or  for a support plan  that was                                                               
not working.   She stated  that this  was most difficult  for the                                                               
person  with the  complex behaviors,  who  was not  able to  make                                                               
themselves understood.  She confirmed  the hesitation and loss of                                                               
confidence by an agency when support  services did not work.  She                                                               
stated that the  CBC provided many solutions  that other agencies                                                               
were not  able to  offer.  She  requested additional  funding for                                                               
CBC.                                                                                                                            
                                                                                                                                
8:21:45 AM                                                                                                                    
                                                                                                                                
JOE HAYES stated that the Key Coalition  was not a want, it was a                                                               
need.   He declared  his support for  proposed HB  79, expressing                                                               
his desire  for its passage  and confirming his  understanding of                                                               
legislative  decisions for  distributing  funds.   He  emphasized                                                               
that people's  needs and  services "should rise  to the  top, the                                                               
quality of someone's life, the  dignity that someone must have to                                                               
live involved  in their community,  to assist  their families..."                                                               
He stressed that any safety  net could provide the difference for                                                               
holding  a family  together.   He requested  support for  the Key                                                               
Coalition.                                                                                                                      
                                                                                                                                
8:24:13 AM                                                                                                                    
                                                                                                                                
SANDRA HORN declared her support  for early infant learning.  She                                                               
shared that  she had  nine children,  with three  having received                                                               
services from early infant learning.   She explained that her son                                                               
had  failed hearing  tests, and  had  received a  referral to  an                                                               
audiologist.  She stressed the  necessity to recognize children's                                                               
needs  early, to  "build a  better foundation  for our  kids, for                                                               
them to  have success  and to be  really involved  and successful                                                               
people in  our communities ..."   She declared that  early infant                                                               
learning had made a difference in her family and her community.                                                                 
                                                                                                                                
8:26:47 AM                                                                                                                    
                                                                                                                                
LAEL FORD, testifying that she  lived in an assisted living home,                                                               
addressed the problem  of the long wait list  for assisted living                                                               
services.   She  shared that  she had  waited for  more than  two                                                               
years for  services.   She offered her  belief that  "people with                                                               
autism have  been put aside,  and not given enough  medical aid."                                                               
She  explained that  her disability  had  been recognized,  which                                                               
allowed  her to  receive  the necessary  medical  coverage.   She                                                               
appealed for  funding for CBC  and for counseling services.   She                                                               
announced that  her adoptive father was  wonderful and supportive                                                               
for her independence.  She stated  that "hopefully we can get all                                                               
this stuff passed so other people don't have to suffer."                                                                        
                                                                                                                                
8:29:33 AM                                                                                                                    
                                                                                                                                
DENNIS HAAS  described that his  daughter, Katie,  had contracted                                                               
spinal  meningitis at  five weeks  of age,  and that  she had  80                                                               
percent brain damage.  He shared  that, although he had been told                                                               
that her life expectancy would be  about 12 years, she was now 30                                                               
years of  age.  He declared  that, as a result  of the disability                                                               
support programs,  she was able to  live at home, with  24 hour a                                                               
day care.   Although she was blind, and did  not speak, he shared                                                               
that Katie  enjoyed her life,  shopping, listening to  music, and                                                               
spending  time  with  friends  and  family.    He  described  the                                                               
pleasures for Katie when her  family visited its cabin in Kodiak.                                                               
He  expressed his  worries  for  what would  happen  to Katie  if                                                               
something happened to  him.  He stated that  the current programs                                                               
allowed people to  stay in their home and  community, and receive                                                               
care at  home.   He encouraged  continued support  for disability                                                               
programs.                                                                                                                       
                                                                                                                                
8:32:40 AM                                                                                                                    
                                                                                                                                
STEVE LESKO,  past President, Key  Coalition of  Alaska, declared                                                               
that he had been  with the Key Campaign for all  of its 25 years.                                                               
He stated:                                                                                                                      
                                                                                                                                
     the people here with me  today have been my colleagues,                                                                    
     my  associates, my  friends, and  in so  many ways,  my                                                                    
     heroes.    You  see,  I don't  need  Batman  and  Green                                                                    
     Lantern, and  I don't  need Superman, because  I've got                                                                    
     the real  thing in  back of me.   These  parents, these                                                                    
     individuals who  experience challenges, have  come here                                                                    
     for  a quarter  of a  century, and  they have  told you                                                                    
     their stories.  I think  some of you, but not everyone,                                                                    
     realizes  that  for every  story  you've  heard for  25                                                                    
     years, there's a price that  these people pay.  I can't                                                                    
     even tell you  how many times when  something like this                                                                    
     is over, the parent is  in the hallway crying, when the                                                                    
     memories  come   flooding  back  of   broken  families,                                                                    
     spouses that have left, siblings  that have gone apart,                                                                    
     the family unit disintegrates.   The price our family's                                                                    
     pay is pain,  and that is an awful thing  to exact from                                                                    
     anybody.                                                                                                                   
                                                                                                                                
MR. LESKO  referenced a  story about the  Good Samaritan  told by                                                               
Martin Luther King  the day before his death,  which explored the                                                               
necessity to  ask the  right questions.   He compared  the ethnic                                                               
devaluation of  people in  this story  with the  same devaluation                                                               
toward  people with  disabilities today,  citing that  people are                                                               
still shipped out of Alaska  because there are no resources here.                                                               
He further recounted:                                                                                                           
                                                                                                                                
     people  pass this  man by  because they  ask the  wrong                                                                    
     question.   They  said, 'what  will happen  to me  if I                                                                    
     stop  and help  him.'   Wrong question.   We  should be                                                                    
     asking, 'what  will happen to  him if I don't  stop and                                                                    
     help him.'   It  changes everything.   If you  take the                                                                    
     egocentricity out of it, and  you look at our families,                                                                    
     you look  at our people experiencing  disabilities, and                                                                    
     say  to yourselves,  as  Alaska  State Legislature  and                                                                    
     administration, 'what  will happen  to our  families if                                                                    
     you don't respond.'                                                                                                        
                                                                                                                                
MR. LESKO  declared that the  [proposed] autism bill [HB  79] had                                                               
been called a mandate, and he offered his belief that:                                                                          
                                                                                                                                
     until the day I die,  the greatest mandate you have and                                                                    
     I  have and  we have  is to  preserve our  family unit.                                                                    
     Nothing  is greater  than that.    So, if  you want  to                                                                    
     prioritize, put  our families first  as so many  of you                                                                    
     have done.   We  want to  just say  to you,  because of                                                                    
     you, who've been  heroes to us too, you  have made such                                                                    
     a  difference  in the  lives  of  Alaskans.   Is  there                                                                    
     anything else we can do in  our lives than to say we've                                                                    
     touched each other?  ... When  my time comes, I want to                                                                    
     say,  as Horace  Mann did,  I would  be ashamed  to die                                                                    
     unless I had  won some small victory for  humanity.  On                                                                    
     behalf of  my heroes for  25 years, we applaud  you; we                                                                    
     applaud   you  our   legislature,   for   all  of   the                                                                    
     differences you have  made in the lives  of our Alaskan                                                                    
     families.  ...  Our  job, if  anything  else  with  our                                                                    
     families with disabilities, is to  say ... that we care                                                                    
     enough that  you don't  have to  lose sleep  and wonder                                                                    
     and ask  that question time  and time again,  what will                                                                    
     happen to  my son,  my daughter  when I  am gone.   You                                                                    
     will never  have to  worry about that  again.   To you,                                                                    
     our legislature,  thank you for 25  years of incredible                                                                    
     support.                                                                                                                   
                                                                                                                                
MR. LESKO, in conclusion, asked that the priorities, including                                                                  
autism insurance reform and CBC, be addressed and he declared to                                                                
the committee:  "We love you and we thank you."                                                                                 
                                                                                                                                
8:39:44 AM                                                                                                                    
                                                                                                                                
CHAIR DAVIS thanked Mr. Lesko for all his service.                                                                              
                                                                                                                                
8:40:37 AM                                                                                                                    
                                                                                                                                
ADJOURNMENT                                                                                                                   
                                                                                                                                
There being no  further business before the  committee, the joint                                                               
meeting  of  the  House  Health   and  Social  Services  Standing                                                               
Committee  and the  Senate Health  and  Social Services  Standing                                                               
Committee meeting was adjourned at 8:40 a.m.                                                                                    

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