Legislature(2017 - 2018)CAPITOL 106

02/01/2018 03:00 PM House HEALTH & SOCIAL SERVICES

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03:05:38 PM Start
03:06:04 PM Presentation: 2018 Update Governor's Council on Disabilities & Special Education
03:50:55 PM Adjourn
* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
+ Presentation: Update from Governor’s Council on TELECONFERENCED
Disabilities & Special Education
Presentation will finish prior to 3:45 pm for
DHS Subcommittee
+ Bills Previously Heard/Scheduled TELECONFERENCED
                    ALASKA STATE LEGISLATURE                                                                                  
      HOUSE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE                                                                     
                        February 1, 2018                                                                                        
                           3:05 p.m.                                                                                            
MEMBERS PRESENT                                                                                                               
Representative Ivy Spohnholz, Chair                                                                                             
Representative Bryce Edgmon, Vice Chair                                                                                         
Representative Sam Kito                                                                                                         
Representative Geran Tarr                                                                                                       
Representative Jennifer Johnston                                                                                                
Representative Colleen Sullivan-Leonard                                                                                         
Representative Dan Saddler (alternate)                                                                                          
MEMBERS ABSENT                                                                                                                
Representative David Eastman                                                                                                    
Representative Matt Claman (alternate)                                                                                          
COMMITTEE CALENDAR                                                                                                            
PRESENTATION: 2018 UPDATE GOVERNOR'S COUNCIL ON DISABILITIES &                                                                  
SPECIAL EDUCATION                                                                                                               
     - HEARD                                                                                                                    
PREVIOUS COMMITTEE ACTION                                                                                                     
No previous action to record                                                                                                    
WITNESS REGISTER                                                                                                              
PATRICK REINHART, Executive Director                                                                                            
Governor's Council on Disabilities & Special Education                                                                          
Anchorage, Alaska                                                                                                               
POSITION STATEMENT:  Presented a PowerPoint titled "2018                                                                      
MAGGIE WINSTON, Chair                                                                                                           
Governor's Council on Disabilities & Special Education                                                                          
Kenai, Alaska                                                                                                                   
POSITION STATEMENT:  Presented a PowerPoint titled "2018                                                                      
JEANNE GERHARDT-CYRUS, Chair                                                                                                    
FASD Workgroup                                                                                                                  
Kiana, Alaska                                                                                                                   
POSITION  STATEMENT:    Presented   a  PowerPoint  titled  "2018                                                              
ACTION NARRATIVE                                                                                                              
3:05:38 PM                                                                                                                    
CHAIR IVY SPOHNHOLZ called the  House Health and Social Services                                                              
Standing   Committee    meeting   to   order   at    3:05   p.m.                                                                
Representatives  Spohnholz,  Tarr,  Sullivan-Leonard,  Johnston,                                                                
Kito, and Saddler (alternate) were present at the call to order.                                                                
Representative Edgmon arrived as the meeting was in progress.                                                                   
^Presentation: 2018 Update Governor's  Council on Disabilities &                                                              
Special Education                                                                                                             
          Presentation: 2018 Update Governor's Council                                                                      
              on Disabilities & Special Education                                                                           
3:06:04 PM                                                                                                                    
CHAIR SPOHNHOLZ announced that the  only order of business would                                                                
be  a  PowerPoint  presentation  by the  Governor's  Council  on                                                                
Disabilities & Special Education.                                                                                               
3:06:35 PM                                                                                                                    
PATRICK  REINHART,  Executive  Director, Governor's  Council  on                                                                
Disabilities & Special Education,  presented a PowerPoint titled                                                                
"2018 Update"  and he  discussed slide 1,  "Council Roles:"   He                                                                
reported  that   the  council   had  multiple  roles   in  state                                                                
government, listing their work as the Developmental Disabilities                                                                
Council, the  State Interagency  Coordinating Council  (ICC) for                                                                
infants and toddlers with disabilities, the Beneficiary Advisory                                                                
Board to the Alaska Mental Health Trust Authority, the Governing                                                                
Body of  the Special  Education Service  Agency (SESA),  and the                                                                
Special Education Advisory Panel (SEAP) for  the state on behalf                                                                
of  the  Department of  Education  and  Early  Development.   He                                                                
pointed  out that  the role  and responsibility  of  the council                                                                
covered multiple  state departments.   He moved  on to  slide 2,                                                                
"State 5 - Year Plan:"  and reported that they had just finished                                                                
a five-year plan with  input from all over the  state.  He noted                                                                
that most  research was done by  survey.  He  declared that they                                                                
had arrived at five different goal areas:  empowered to live and                                                                
thrive  in  communities;  competitively employed  in  integrated                                                                
settings; skills for education success and independence; receive                                                                
appropriate services and supports; and improved quality of life.                                                                
He stated that all the objectives and activities for the council                                                                
would fall into these five areas.                                                                                               
3:10:26 PM                                                                                                                    
MR. REINHART  reported that  he would offer  an overview  of two                                                                
bills that the  council was developing. He  introduced the first                                                                
of  these two  bills,  slide 3,  "Developmental  Disability (DD)                                                                
Shared Vision:"                                                                                                                 
3:11:09 PM                                                                                                                    
MAGGIE  WINSTON, Chair,  Governor's  Council  on Disabilities  &                                                                
Special Education,  spoke about slide  3, and reported  that the                                                                
council  was working  on  this shared  vision  for developmental                                                                
disabilities and  the State of  Alaska.  She  explained that the                                                                
project  teams   were  meeting  with   state  agencies,  service                                                                
providers,  families,  care  coordinators,  and  individuals  to                                                                
provide  better  services  for  individuals  with  developmental                                                                
disabilities.   She stated  that the goal  was to  make services                                                                
more  person centered, so  that  people were  in control  of the                                                                
services  they received  in  an  integrated  home and  community                                                                
setting of their choosing.                                                                                                      
3:12:18 PM                                                                                                                    
MS.  WINSTON  declared  that  person centered  care  allowed  an                                                                
individual to  add more  meaning to  their life.   She  shared a                                                                
personal  anecdote about  her life  and the  services which  she                                                                
received.    She acknowledged  that,  given  the current  budget                                                                
climate, there  would be a  difference in opinion for  how these                                                                
services should be provided.  She directed attention to slide 4,                                                                
"Moving Forward Together:" and stated that the goal was to set a                                                                
sustainable future in  statute that would enable  people to look                                                                
forward to the  future and be safe in  knowing that the services                                                                
would be provided.                                                                                                              
CHAIR SPOHNHOLZ  asked about  the cut  in her  personal services                                                                
from 24  hours each  day, seven  days a week,  to 35  hours each                                                                
MS. WINSTON, in response, explained  that this cut was currently                                                                
in the  appeals process,  and that if  this happened,  she would                                                                
need to move from her home  with her two teenage children into a                                                                
nursing facility, which was more expensive than her current home                                                                
3:15:06 PM                                                                                                                    
MR. REINHART spoke about the graphic on slide 4, and the savings                                                                
for  this move  toward  home and  community-based services  from                                                                
institutional care, which amounted to  about one-third the cost.                                                                
He reported  that this had  been the chosen  direction since the                                                                
3:16:41 PM                                                                                                                    
REPRESENTATIVE JOHNSTON  reflected that  6  - 8  percent of  the                                                                
population were  the big cost  drivers for health care,  and she                                                                
asked about the  percentage of home-based costs  over a ten-year                                                                
3:17:35 PM                                                                                                                    
MR. REINHART replied  that, although he did not  have a ten-year                                                                
projection, the department  had compared each of  the four types                                                                
of waiver  costs and that  the average cost  for a developmental                                                                
disability waiver was about $89,000 per person, with some people                                                                
costing more and some people costing less.                                                                                      
REPRESENTATIVE JOHNSTON asked for further information.                                                                          
3:19:03 PM                                                                                                                    
REPRESENTATIVE KITO  asked what situation prompted  the proposed                                                                
change from 24-hour care to 35 hours of care each week.                                                                         
MS. WINSTON  explained that  there had  been changes  in certain                                                                
convoluted regulations for group home services, and that she had                                                                
opted  to choose  different supported  living services  for more                                                                
freedom and independence.                                                                                                       
REPRESENTATIVE  KITO asked  if  this was  a  situation that  was                                                                
happening to other people with developmental disabilities.                                                                      
MS.  WINSTON  expressed  her  agreement,  stating  that  it  was                                                                
happening to many individuals.                                                                                                  
3:20:20 PM                                                                                                                    
REPRESENTATIVE SULLIVAN-LEONARD asked if this was a state change                                                                
or a Medicaid change.                                                                                                           
MS. WINSTON replied that it was a state change.                                                                                 
3:20:47 PM                                                                                                                    
MR. REINHART moved  on to slide 5, "DD  Shared Vision Bill," and                                                                
explained that it would put this  in statute, so that all future                                                                
administrations would look  at this when reviewing  the home and                                                                
community-based services waiver programs.  He reported that they                                                                
were working on some  draft aspirational language which could be                                                                
added to the statute, "a lens that  we just want to put over the                                                                
top of all these services" which would lead to "meaningful lives                                                                
for citizens with disabilities."                                                                                                
3:21:51 PM                                                                                                                    
JEANNE GERHARDT-CYRUS, Chair, FASD Workgroup, addressed slide 6,                                                                
"Supported Decision Making:" and explained that it referred to a                                                                
third  opportunity  for  people  who,  in  the  past,  had  been                                                                
automatically granted  either a full  or limited guardian.   She                                                                
said that  supported decision making went along  with the vision                                                                
for  developmentally disabled to  have  more control  over their                                                                
lives and be  able to choose where and how  they wanted to live.                                                                
She  declared  that  this  was   a  civil  rights  issue.    She                                                                
acknowledged  that,   although   some  people   may  need   full                                                                
guardianship, not everyone  did.  She pointed  out that although                                                                
people may need help with some things, this would allow them the                                                                
right to  maintain decision making  power over their  own lives.                                                                
She moved on  to slide 7, "Supported  Decision Making Bill," and                                                                
stated that this  bill was very close to  being presented to the                                                                
legislature.    She  reported  that  the  recommended  ratio  of                                                                
guardian to ward was 1 to 20, and in Alaska, as this ratio was 1                                                                
to 109,  the opportunity to  do any planning  or discussion with                                                                
the  individual  was  "pretty  limited if  non-existent."    She                                                                
declared  that supported  decision  making  would provide  equal                                                                
access for the individual and allow  them to establish a team of                                                                
people  they  wanted  to  have  discussion and  input  for  life                                                                
decisions.  She opined that  there had been positive support for                                                                
similar legislation in other states.                                                                                            
MR.  REINHART added  that they  supported the  increase for  the                                                                
Office  of  Public  Advocacy  which had  been  included  in  the                                                                
governor's budget.                                                                                                              
3:25:06 PM                                                                                                                    
MS. GERHARDT-CYRUS  pointed out  that she was  the Chair  of the                                                                
FASD  [Fetal  Alcohol  Spectrum  Disorders]  work  group.    She                                                                
presented slide 8,  "FASD 5 - Year Plan:"  and reported that the                                                                
workplan and the vision had now been finalized.  She stated that                                                                
the goal was for Alaska to become an FASD informed state.                                                                       
MS. GERHARDT-CYRUS moved  on to slide  9, "FASD 5  - Year Plan:"                                                                
and explained that FASD was a  range of disabilities and did not                                                                
affect everyone together, as it  depended on the time and amount                                                                
of exposure, as well as  genetic differences.  She stated that a                                                                
goal was to reduce the incidence of alcohol exposed pregnancies,                                                                
pointing out  that this  was 100 percent  preventable, providing                                                                
there were  the supports  and services  necessary for  women and                                                                
families to  assist with  healthy pregnancies "because  it's not                                                                
just a  woman's issue."  She  declared that it  was important to                                                                
address  the stigma  associated  with FASD  for  birth moms  and                                                                
individuals.  She listed the need to reduce the co-occurrence of                                                                
childhood trauma  and FASD  by increasing support  for families.                                                                
She pointed out  that many people with FASD did  not qualify for                                                                
services in the developmental disabilities program and would not                                                                
qualify for a waiver unless they had a diagnosis outlined in the                                                                
federal regulations.  She reported  that these people could have                                                                
chronic failure as they may not respond to typical strategies at                                                                
home  and in  school.    She reiterated  that  reducing the  co-                                                                
occurrence  of  childhood  trauma   and  FASD,  addressing  FASD                                                                
informed  care,  and  advocating for  fully  funded  appropriate                                                                
services were all goals.   She relayed that five work groups had                                                                
been formed,  with funding from  the Alaska Mental  Health Trust                                                                
Authority and partnerships with 18  entities.  She reported that                                                                
there would  be quarterly meetings,  with a focus  on developing                                                                
action plans, reviewing finances,  and identifying resources for                                                                
the top  three objectives  listed on  slide 9.   She  noted that                                                                
behavioral health issues were often  a result of chronic failure                                                                
co-occurring disorders.                                                                                                         
3:31:54 PM                                                                                                                    
REPRESENTATIVE JOHNSTON  stated that, as  diagnosis was  often a                                                                
stigma, families  would not allow  diagnosis, and asked  if that                                                                
had been addressed to allow follow through with the remainder of                                                                
the goals.                                                                                                                      
MS. GERHARDT-CYRUS said that  it continued to be an  issue.  She                                                                
reported that the All Alaska Pediatric Partnership would conduct                                                                
its  own developmental  screenings for  all  neuro developmental                                                                
issues as  early as possible.   She opined that  this would help                                                                
with diagnosis.                                                                                                                 
3:33:55 PM                                                                                                                    
REPRESENTATIVE  TARR  recalled  that the  state  had  previously                                                                
funded a project for pregnancy tests in bathrooms.  She asked if                                                                
there was any  discussion in the community about  the success of                                                                
this project,  and whether there  had been  any follow up.   She                                                                
asked whether this would be a part of any prevention strategy.                                                                  
MS. GERHARDT-CYRUS  replied that,  although she  was not  on the                                                                
prevention workgroup, anything that was effective for preventing                                                                
alcohol exposed pregnancy  was helpful.  She  shared an anecdote                                                                
about five women who had written in with thanks after taking the                                                                
3:36:12 PM                                                                                                                    
REPRESENTATIVE TARR  suggested that this  could be a  lower cost                                                                
MS. GERHARDT-CYRUS relayed  that currently there were not  a lot                                                                
of asks  to the  Legislature, although the priority  area groups                                                                
could bring many ideas forward.                                                                                                 
3:37:56 PM                                                                                                                    
CHAIR  SPOHNHOLZ acknowledged  the in-depth,  comprehensive work                                                                
plan addressing  FASD by  Ms. Gerhardt-Cyrus, and  she expressed                                                                
her  "hope for  the  future" after  reading it.    She shared  a                                                                
personal  anecdote about  her  daughter and  the struggles  with                                                                
testing for FASD.                                                                                                               
MS. GERHARDT-CYRUS stated that now was a time for action.                                                                       
3:40:21 PM                                                                                                                    
MR. REINHART reported that there was  an autism ad hoc group and                                                                
shared   that  the   state   would   now   have  two   pediatric                                                                
neurodevelopment specialists,  slide  10, "Autism  Update:"   He                                                                
noted that  there were  11 rural outreach  clinics and  that the                                                                
Center for  Human Development  at the  University of  Alaska had                                                                
started Alaska  ECHO Autism,  which included the  expertise from                                                                
providers around  the country  in a  video conference  format to                                                                
deal  directly with  practitioners and  discuss  the issues  and                                                                
problems encountered in diagnosis and service.                                                                                  
3:42:21 PM                                                                                                                    
MR. REINHART moved  on to slide 11, "Autism Update:  ABA - EBSDT                                                                
Regs,"  and   shared  the   suggestion  that  the   state  adopt                                                                
regulations  that allowed  for applied  behavioral  analysis, an                                                                
evidence-based treatment.  He reported that the council reviewed                                                                
and commented on the  draft regulations and shared that Medicaid                                                                
payment for this treatment was getting closer.                                                                                  
3:43:35 PM                                                                                                                    
MR.  REINHART   directed  attention  to   slide  12,  "Universal                                                                
Developmental Screening."  He stated that the sooner there was a                                                                
diagnosis   for   young   children  experiencing   developmental                                                                
disabilities, the sooner they could get into services.                                                                          
3:44:54 PM                                                                                                                    
MS. WINSTON  spoke about slide  13, "ABLE Update:"  and reported                                                                
that the ABLE  Act had been passed in August  2016 and the first                                                                
accounts had been opened that December.  She reported that there                                                                
were currently 94 ABLE accounts with  quite a bit of funding and                                                                
it  enabled individuals  with  disabilities to  save for  things                                                                
related to  their disabilities.  She  shared that the  number of                                                                
accounts  being opened  was  increasing, and  that the  outreach                                                                
continued through presentations and social media to benefit more                                                                
MR.  REINHART thanked  Representative Saddler  for  his work  in                                                                
passage of the ABLE Act in Alaska.                                                                                              
3:46:16 PM                                                                                                                    
MR. REINHART  moved on to  slide 14,  "Employment First Update:"                                                                
and shared  that the legislation had  been aspirational language                                                                
in   the  expectation   for  employment   of   individuals  with                                                                
disabilities.  He stated that continued emphasis for expectation                                                                
would create a long-term shift  in policy and attitude, and that                                                                
young people now  in school had  the expectation for employment.                                                                
He pointed  to the  repeal of sub  minimum wage for  people with                                                                
disabilities.    He  shared  that there  was  work  across  many                                                                
3:48:37 PM                                                                                                                    
REPRESENTATIVE  TARR  asked  about a  U.S.  Supreme  Court  case                                                                
related to  services for  children with disabilities  in school,                                                                
which challenged the  Department of Education  for definition of                                                                
MR. REINHART said that he would research the case.                                                                              
3:49:43 PM                                                                                                                    
CHAIR  SPOHNHOLZ expressed  her excitement  with  the employment                                                                
first update and the progress being  made.  She declared that we                                                                
gained meaning in  our lives from our work and,  in our culture,                                                                
how we work  was how we defined ourselves.   She emphasized that                                                                
it  was important to  be  able to  work in  a way  that provided                                                                
meaning  in  our lives,  and  she  detailed  how this  developed                                                                
happiness, confidence, and  respect from adults and  peers.  She                                                                
offered her belief that  work gave individuals meaning and focus                                                                
in their lives.                                                                                                                 
3:50:55 PM                                                                                                                    
There being no further  business before the committee, the House                                                                
Health  and  Social  Services  Standing  Committee  meeting  was                                                                
adjourned at 3:50 p.m.                                                                                                          

Document Name Date/Time Subjects
GCDSE Presentation to House and Senate HSS.pdf HHSS 2/1/2018 3:00:00 PM
Governor's Council on Disabilities and Special Education