Legislature(2019 - 2020)CAPITOL 106

02/06/2020 03:00 PM HEALTH & SOCIAL SERVICES

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Audio Topic
03:14:33 PM Start
03:15:24 PM Presentation: Advocacy for People with Disabilities
03:37:29 PM Adjourn
* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
-- Teleconference Listen Only --
+ Presentation: Advocacy for People with TELECONFERENCED
Disabilities by
- Emily Ennis, Key Coalition
- Kristin Vandergriff, Governor's Council on
Disabilities & Special Education
                    ALASKA STATE LEGISLATURE                                                                                  
      HOUSE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE                                                                     
                        February 6, 2020                                                                                        
                           3:14 p.m.                                                                                            
                                                                                                                                
MEMBERS PRESENT                                                                                                               
                                                                                                                                
Representative Tiffany Zulkosky, Chair                                                                                          
Representative Ivy Spohnholz, Vice Chair                                                                                        
Representative Matt Claman                                                                                                      
Representative Harriet Drummond                                                                                                 
Representative Geran Tarr                                                                                                       
Representative Lance Pruitt                                                                                                     
                                                                                                                                
MEMBERS ABSENT                                                                                                                
                                                                                                                                
Representative Sharon Jackson                                                                                                   
                                                                                                                                
COMMITTEE CALENDAR                                                                                                            
                                                                                                                              
PRESENTATION: ADVOCACY FOR PEOPLE WITH DISABILITIES                                                                             
                                                                                                                                
     - HEARD                                                                                                                    
                                                                                                                                
PREVIOUS COMMITTEE ACTION                                                                                                     
                                                                                                                                
No previous action to record                                                                                                    
                                                                                                                                
WITNESS REGISTER                                                                                                              
                                                                                                                                
DENNIS HAAS, President                                                                                                          
Key Coalition                                                                                                                   
Anchorage, Alaska                                                                                                               
POSITION STATEMENT:  Testified and offered information during                                                                 
the presentation on Advocacy for People with Disabilities.                                                                      
                                                                                                                                
KRISITN VANDAGRIFF, Executive Director                                                                                          
Governor's Council on Disabilities & Special Education                                                                          
Division of Senior and Disability Services                                                                                      
Department of Health & Social Services                                                                                          
Anchorage, Alaska                                                                                                               
POSITION STATEMENT:  Introduced witnesses and provided                                                                        
information during the presentation on Advocacy for People with                                                                 
Disabilities.                                                                                                                   
                                                                                                                                
COREY GILMORE, Chair                                                                                                            
Governor's Council on Disabilities & Special Education                                                                          
Division of Senior and Disability Services                                                                                      
Department of Health & Social Services                                                                                          
Anchorage, Alaska                                                                                                               
POSITION   STATEMENT:  Testified   during  the   presentation  on                                                             
Advocacy for People with Disabilities.                                                                                          
                                                                                                                                
ART DELAUNE, Legislative Committee Chair                                                                                        
Governor's Council on Disabilities & Special Education                                                                          
Division of Senior and Disability Services                                                                                      
Department of Health & Social Services                                                                                          
Anchorage, Alaska                                                                                                               
POSITION  STATEMENT:    Testified  and  offered  information  via                                                             
PowerPoint during  the presentation  on Advocacy for  People with                                                               
Disabilities.                                                                                                                   
                                                                                                                                
ACTION NARRATIVE                                                                                                              
                                                                                                                                
3:14:33 PM                                                                                                                    
                                                                                                                                
CHAIR  TIFFANY  ZULKOSKY  called  the  House  Health  and  Social                                                             
Services  Standing  Committee  meeting  to  order  at  3:14  p.m.                                                               
Representatives  Zulkosky, Spohnholz,  Claman, and  Drummond (via                                                               
teleconference)   were   present   at    the   call   to   order.                                                               
Representatives Tarr  and Pruitt  arrived as  the meeting  was in                                                               
progress.                                                                                                                       
                                                                                                                                
^Presentation: Advocacy for People with Disabilities                                                                            
      Presentation: Advocacy for People with Disabilities                                                                   
                                                                                                                              
3:15:24 PM                                                                                                                    
                                                                                                                                
CHAIR ZULKOSKY announced  that the first order  of business would                                                               
be a presentation on Advocacy for People with Disabilities.                                                                     
                                                                                                                                
3:15:45 PM                                                                                                                    
                                                                                                                                
DENNIS  HAAS,  President, Key  Coalition  testified  that he  is,                                                               
"first  and  foremost, Katie's  (ph)  dad."   The  Key  Coalition                                                               
celebrates its  [twenty-second] year of advocacy  for Individuals                                                               
with Developmental Disabilities (IDD) in  Alaska.  At the time of                                                               
its formation, there  was to be a large cut  to program services,                                                               
and as a  result, 30-40 people traveled from  Anchorage and other                                                               
locations across  the state to Juneau  to contest the cuts.   The                                                               
group's activity  resulted in less substantive  cuts to programs,                                                               
and therein  the citizens decided  that it would be  necessary to                                                               
organize  to  continue  advocacy   work  each  year  to  maintain                                                               
funding.                                                                                                                        
                                                                                                                                
MR. HAAS  related his personal story  of caring for a  child with                                                               
severe developmental disabilities.   He explained that his family                                                               
is required  to write and  submit a  new plan for  his daughter's                                                               
care  each  year.    His  daughter,  Katie,  is  blind,  severely                                                               
disabled, doesn't  talk, and  is living without  a pancreas.   He                                                               
testified that this year, his  daughter's care plan was rejected,                                                               
resulting in cuts to the  in-home support services they have been                                                               
receiving, from 56 hours per week  to only 23.5 hours of care per                                                               
week.  He  postulated that this reduced amount of  service is not                                                               
enough hours to keep his daughter  alive.  He noted that his fear                                                               
of danger  to his daughter  is compounded  by his and  his wife's                                                               
advancing age.  Mr. Haas declared  deep gratitude to the State of                                                               
Alaska  for the  services that  they  have received  to date  and                                                               
emphasized that those services are lifesaving.                                                                                  
                                                                                                                                
MR. HAAS  explained that  there is a  waitlist for  services that                                                               
consists of 730 people who, due  to lack of funding, may continue                                                               
to wait  for several  years to receive  necessary services.   The                                                               
Key   Coalition's  priority   is  to   advocate  until   all  the                                                               
individuals on the waitlist receive care.                                                                                       
                                                                                                                                
3:20:49 PM                                                                                                                    
                                                                                                                                
MR. HAAS  noted that the  service providers for programs  for IDD                                                               
service  providers haven't  received any  additional funding  for                                                               
approximately four  to five  years.  As  a result,  the servicing                                                               
agencies  cannot effectively  recruit and  retain direct  service                                                               
providers to provide necessary levels of care.                                                                                  
                                                                                                                                
3:21:42 PM                                                                                                                    
                                                                                                                                
REPRESENTATIVE SPOHNHOLZ  asked whether there was  a reason given                                                               
for the cuts to Mr. Hass' weekly services from 56 to 23.5 hours.                                                                
                                                                                                                                
MR.  HAAS  replied that  "they  keep  changing  the rules."    He                                                               
explained  that  he received  a  64-page  document outlining  the                                                               
changes  to  his daughter's  care  plan,  in  which he  found  it                                                               
difficult to  interpret any  reason that  the plan  was rejected.                                                               
He gave  an example of how  one of the specificities  outlined in                                                               
the revised care plan is  not adequate for his daughter's fragile                                                               
health conditions.                                                                                                              
                                                                                                                                
3:23:19 PM                                                                                                                    
                                                                                                                                
REPRESENTATIVE   SPOHNHOLZ  asked   for  confirmation   that  the                                                               
waitlist   consists  of   individuals  waiting   for  home-   and                                                               
community-based services.                                                                                                       
MR. HAAS confirmed yes.                                                                                                         
                                                                                                                                
3:24:09 PM                                                                                                                    
                                                                                                                                
KRISTIN  VANDAGRIFF, Executive  Director,  Governor's Council  on                                                               
Disabilities  &   Special  Education,  Division  of   Senior  and                                                               
Disability  Services, Department  of  Health  & Social  Services,                                                               
noted that she  had provided the committee with a  hard copy of a                                                               
PowerPoint  regarding  "2020  Update  GCDSE,"  [included  in  the                                                               
committee packet].   In the  interest of time, she  explained she                                                               
would not present the PowerPoint,  and instead she introduced the                                                               
next speaker.                                                                                                                   
                                                                                                                                
3:24:44 PM                                                                                                                    
                                                                                                                                
COREY  GILMORE,  Chair,  Governor's  Council  on  Disabilities  &                                                               
Special Education,  Division of  Senior and  Disability Services,                                                               
Department  of Health  &  Social Services  expressed  that he  is                                                               
honored  to  testify  before  the legislature  once  again.    He                                                               
thanked the  State of  Alaska and  the Alaska  State Legislature,                                                               
noting   that   the   legislature   passed   "DD   [Developmental                                                               
Disability] Shared Vision" changing  how care is delivered, which                                                               
places the individuals  receiving the services in  control of the                                                               
planning for  their own care  that works  the best for  their own                                                               
lives.                                                                                                                          
                                                                                                                                
3:26:11 PM                                                                                                                    
                                                                                                                                
ART DELAUNE,  Legislative Committee Chair, Governor's  Council on                                                               
Disabilities  &   Special  Education,  Division  of   Senior  and                                                               
Disability  Services,  Department  of Health  &  Social  Services                                                               
testified  for the  purposes of  providing  the legislature  with                                                               
program  progress updates  and to  request continued  support for                                                               
the programs.   He  drew attention  to a  PowerPoint presentation                                                               
regarding "2020  Update GCDSE," to  slide 8,  entitled "Supported                                                               
Decision Making Agreements Act."  He said he supports the Act.                                                                  
The SDMA  (Supported Decision Making  Agreements Act)  was passed                                                               
during the 30th  Legislature in November 2018.   The SDMA changed                                                               
how  care is  received and  allows the  option for  guardianship.                                                               
The SDMA  allows the disabled  person to direct his/her  own care                                                               
with the  help of supporters,  formalizing the  agreement between                                                               
the  individual  and  his/her supporters.    The  SDMA  clarifies                                                               
responsibilities and  allows the individual  to direct  goals and                                                               
priorities toward a  more meaningful life.   Mr. Delaune provided                                                               
a personal example of his  family's positive experience with this                                                               
change; his  disabled son has been  able to remain employed.   He                                                               
said the council  has provided materials to the  House Health and                                                               
Social  Services Standing  Committee in  the hopes  of increasing                                                               
program visibility to possible qualified recipients.                                                                            
                                                                                                                                
3:28:02 PM                                                                                                                    
                                                                                                                                
MR. GILMORE  acknowledged his disability  and the  limitations in                                                               
routine activities and  personal care that he  cannot perform for                                                               
himself.  The service levels  provided though the program are not                                                               
at completely adequate levels; however,  the services that are in                                                               
place are highly effective and  support not only the individual's                                                               
personal  hygiene  and care,  but  also  allow the  recipient  to                                                               
participate in his/her own community  and perform activities such                                                               
as  outreach  and mentoring  to  children  with disabilities  and                                                               
special  needs.   Referring to  the PowerPoint  previously cited,                                                               
Mr.  Gilmore  drew attention  to  slide  13, entitled  "Home  and                                                               
Community  Based Services  are  Cost Savings".    These types  of                                                               
support  services   are  more  cost   effective  than   would  be                                                               
institutionalization,  by an  estimate  of 2.5  times less  cost.                                                               
Mr.  Gilmore  left the  committee  with  the sentiment  that  all                                                               
people  need  help  at  some  point in  their  lives,  and  these                                                               
services need to remain available now and in the future.                                                                        
                                                                                                                                
                                                                                                                                
3:30:30 PM                                                                                                                    
                                                                                                                                
MR. DELAUNE indicated that the  Key Coalition is working with the                                                               
state to  recommend removal  of barriers  to efficiency  such as:                                                               
unnecessary  regulations, application  processes, re-evaluations,                                                               
and  reporting requirements  that individuals  who have  received                                                               
Medicaid  waivers  must  fulfill  to maintain  services.    These                                                               
individuals  have lifelong  static medical  conditions which  are                                                               
not  going  to be  resolved  through  medical care,  and  current                                                               
methods  of  reporting  and monitoring  of  these  conditions  is                                                               
wasteful  of limited  resources.   Another recommendation  is [to                                                               
include transportation costs as part  of the program that employs                                                               
people  with  disabilities].   This  would  open more  employment                                                               
opportunities  and   thereby  reduce  costs  by   reducing  their                                                               
reliance   on   other   welfare   programs'   funds.      Another                                                               
recommendation   is  to   eliminate   burdensome  processes   and                                                               
bureaucracy to  increase flexibility for purchases  for the home,                                                               
especially  consumables such  as diapers.   The  program requires                                                               
recipients  to  procure  through limited,  authorized  suppliers,                                                               
which is inflexible, inefficient, and costs more.                                                                               
                                                                                                                                
3:33:04 PM                                                                                                                    
                                                                                                                                
MR. DELAUNE, referring to the  PowerPoint previously cited by Mr.                                                               
Gilmore, drew  attention to slide 17,  entitled "Increase savings                                                               
and  self-determination by  offering  an option  for people  with                                                               
I/DD  to more  closely direct  their services."   He  indicated a                                                               
potential increase  in savings  by streamlining  or consolidating                                                               
care programs for IDDs.   Currently there are multiple sources of                                                               
funding  with  separate   administrative  requirements,  and  the                                                               
Council  recommends that  these funds  be combined  to streamline                                                               
resources available for an individual's  self-directed care.  Mr.                                                               
Delaune  explained  his personal  experience  of  losing some  of                                                               
these  services  for  his  son.   He  testified  that  the  Adult                                                               
Companion Service available  hours were capped in  2018, and that                                                               
the Adult  Companion Service  is a  low-cost way  for individuals                                                               
with  disabilities  to  participate  meaningfully  in  their  own                                                               
communities.   Prior to cuts,  his son was socially  active three                                                               
times  per week  and benefitted  from these  community activities                                                               
and social opportunities  that the services provided.   He is now                                                               
socially isolated except  for the time he spends out  of the home                                                               
while  at  work.    Mr.  Delaune  left  the  committee  with  the                                                               
sentiment  that the  manner in  which we  treat individuals  with                                                               
disabilities and  the elderly  reflects the  values that  are and                                                               
should remain important.                                                                                                        
                                                                                                                                
3:35:34 PM                                                                                                                    
                                                                                                                                
REPRESENTATIVE  TARR indicated  that  she  had several  questions                                                               
regarding  the   Council's  recommendations  per   the  materials                                                               
provided,  and   in  the  interest   of  time  would   follow  up                                                               
separately, save  for one clarification.     She asked  that in a                                                               
circumstance  in   which  a  need  for   increased  services  was                                                               
[determined],  would  the  individual  be able  to  initiate  the                                                               
increased services,  or otherwise,  for continuing  services, re-                                                               
apply on an annual renewal basis?                                                                                               
                                                                                                                                
MR DELAUNE  answered that an  IDD has  "plans of care",  and they                                                               
can make changes to those plans.                                                                                                
                                                                                                                                
3:36:38 PM                                                                                                                    
                                                                                                                                
KRISITN VANDAGRIFF specified  that it would be through  a plan of                                                               
care amendment.                                                                                                                 
                                                                                                                                
3:36:43 PM                                                                                                                    
                                                                                                                                
CHAIR ZULKOSKY offered thanks to the presenters.                                                                                
                                                                                                                                
3:37:29 PM                                                                                                                    
                                                                                                                                
ADJOURNMENT                                                                                                                   
                                                                                                                                
There being no further business before the committee, the House                                                                 
Health and Social Services Standing Committee meeting was                                                                       
adjourned at 3:37 p.m.                                                                                                          

Document Name Date/Time Subjects
2020 Gov Council on Dis. & Special Ed. Presentation.pptx HHSS 2/6/2020 3:00:00 PM
2020 Key Campaign Platform Priorities.pdf HHSS 2/6/2020 3:00:00 PM