Legislature(2017 - 2018)BUTROVICH 205

03/02/2018 01:30 PM HEALTH & SOCIAL SERVICES

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Audio Topic
01:32:48 PM Start
01:34:25 PM Presentation: Key Campaign
02:16:19 PM Adjourn
* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
+ Presentation: Key Campaign TELECONFERENCED
-- Testimony <Invitation Only> --
                    ALASKA STATE LEGISLATURE                                                                                  
      SENATE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE                                                                    
                         March 2, 2018                                                                                          
                           1:32 p.m.                                                                                            
MEMBERS PRESENT                                                                                                               
Senator David Wilson, Chair                                                                                                     
Senator Cathy Giessel                                                                                                           
Senator Peter Micciche                                                                                                          
MEMBERS ABSENT                                                                                                                
Senator Natasha von Imhof, Vice Chair                                                                                           
Senator Tom Begich                                                                                                              
COMMITTEE CALENDAR                                                                                                            
PRESENTATION: KEY CAMPAIGN                                                                                                      
     - HEARD                                                                                                                    
PREVIOUS COMMITTEE ACTION                                                                                                     
No previous action to record                                                                                                    
WITNESS REGISTER                                                                                                              
MILLIE RYAN, Executive Director                                                                                                 
REACH, Inc.;                                                                                                                    
Board of Directors                                                                                                              
Key Coalition of Alaska                                                                                                         
Juneau, Alaska                                                                                                                  
POSITION STATEMENT: Presented Key Campaign                                                                                    
COREY GILMORE, Advocate                                                                                                         
Key Coalition of Alaska                                                                                                         
Juneau, Alaska                                                                                                                  
POSITION STATEMENT: Advocated for Key Coalition priorities.                                                                   
SABRINA RICHMOND, Advocate                                                                                                      
Key Coalition of Alaska                                                                                                         
Juneau, Alaska                                                                                                                  
POSITION STATEMENT: Advocated for Key Coalition priorities.                                                                   
LINDA THOMPSON, Advocate                                                                                                        
Key Coalition of Alaska                                                                                                         
Homer, Alaska                                                                                                                   
POSITION STATEMENT: Advocated for Key Coalition priorities.                                                                   
SHELLY VENDETTI-VUCKOVICH                                                                                                       
Key Coalition of Alaska                                                                                                         
Anchorage, Alaska                                                                                                               
POSITION STATEMENT: Advocated for Key Coalition priorities.                                                                   
ROBERT FRICK, Advocate                                                                                                          
Key Coalition of Alaska                                                                                                         
Juneau, Alaska                                                                                                                  
POSITION STATEMENT: Advocated for Key Coalition priorities.                                                                   
ACTION NARRATIVE                                                                                                              
1:32:48 PM                                                                                                                    
CHAIR DAVID WILSON  called the Senate Health  and Social Services                                                             
Standing Committee meeting  to order at 1:32 p.m.  Present at the                                                               
call to  order were  Senators Giessel  and Chair  Wilson. Senator                                                               
Micciche joined shortly thereafter.                                                                                             
^Presentation: Key Campaign                                                                                                     
                    PRESENTATION: KEY CAMPAIGN                                                                              
1:34:25 PM                                                                                                                    
CHAIR WILSON  announced the business  before the committee  was a                                                               
Key Campaign presentation.                                                                                                      
1:34:43 PM                                                                                                                    
MILLIE RYAN,  Executive Director,  REACH, Inc.; Member,  Board of                                                               
Directors,   Key  Campaign,   stated   that   the  campaign   has                                                               
distributed a one-page list of priorities  and a page on home and                                                               
community-based  Medicaid waivers  for people  with developmental                                                               
disabilities. Because  the system  is incredibly  complicated and                                                               
difficult  to explain,  they have  put  together information  for                                                               
them. It lays out what  developmental disabilities are, where and                                                               
how services are funded in  the budget, what the intellectual and                                                               
developmental disabilities  waiver program is, whether  they save                                                               
the  state money,  whether  they  work, what  the  wait list  for                                                               
services is,  what the return  on investment is for  reducing the                                                               
waitlist, and some recommendations for reducing the waitlist.                                                                   
MS. RYAN thanked  Senator Micciche and the Senate  for taking the                                                               
lead  on  increasing the  day  rehabilitation  soft cap  from  an                                                               
average of eight hours  a week to 12 hours a week.  It made a big                                                               
difference in  people's lives. Day habilitation  helps people get                                                               
out and be part of  the community's activities. People need extra                                                               
support to do that when  they have intellectual and developmental                                                               
SENATOR  MICCICHE   said  many   Alaskans  don't  know   how  day                                                               
habilitation helps families  keep individuals [with disabilities]                                                               
at home.  If the stress becomes  too much for families,  the cost                                                               
of  institutionalization is  much  more than  remaining at  home.                                                               
Home-based care includes lots of  volunteer labor helping to keep                                                               
loved ones at home. The further  day habilitation is cut the more                                                               
likely it will  be that the labor will be  replaced by paid care.                                                               
Institutionalized care is exceedingly more  expensive. He said he                                                               
wants to educate people that the  cost shift could be in the tens                                                               
of thousands of dollars a year.                                                                                                 
1:38:03 PM                                                                                                                    
MS.  RYAN said  institutions cost  $200-220,000 a  year. Services                                                               
can  be provided  in the  community for  much less  and it  keeps                                                               
families together.  Research and  experience shows the  stress is                                                               
incredible. The divorce rate is higher.  It is hard for people to                                                               
stay  together  without  the supports  and  services  they  need.                                                               
Families  already contribute  to  the cost  of  caring for  loved                                                               
ones, which  is far more  than caring for  children, particularly                                                               
adult children, without disabilities.                                                                                           
SENATOR  MICCICHE  said he  believes  in  helping the  public  to                                                               
understand  that.   People  don't   understand  that   costs  for                                                               
community   and   home-based   care   is  so   much   less   than                                                               
institutionalization,  and  day  habilitation  helps  keep  those                                                               
costs lower.                                                                                                                    
MS.  RYAN  said the  Medicaid  system  works backwards.  Now,  if                                                               
people meet the  level of care for an institution,  the state has                                                               
to provide that  service, which means people end up  out of state                                                               
at vast  expense and away  from their families and  that support.                                                               
Services like  day habilitation keeps people  in state. Otherwise                                                               
the state  has a mandate  to provide services in  an institution,                                                               
even though it  can be provided at much less  cost using services                                                               
like day habilitation.                                                                                                          
MS.  RYAN thanked  Senator  Micciche for  his  leadership in  the                                                               
Senate passing SB  174. She said a priority for  the Key Campaign                                                               
is a  stable and sustainable  fiscal plan for Alaska.  One reason                                                               
is  to   reactivate  the  commitment  to   reduce  the  waitlist.                                                               
Currently 652  people are  the waitlist.  When demand  for waiver                                                               
services  outstrips the  resources for  providing them,  Medicaid                                                               
allows states to  maintain a waiting list  of individuals waiting                                                               
to   receive   services.   The  waiver   for   intellectual   and                                                               
developmental disabilities  is the only waiver  that requires the                                                               
state to  do that. The other  reason is they are  not seeing much                                                               
flexibility for the day habilitation  cap. Twelve hours is enough                                                               
for some people. Duane Mayes,  Director of the Division of Senior                                                               
and Disabilities Services at the  Department of Health and Social                                                               
Services (DHSS)  said of  the 117  requests for  day habilitation                                                               
over the cap,  only five were funded. Some  people with medically                                                               
complex  needs   require  24-hour  assistance.  Having   the  day                                                               
habilitation cut  makes it  more difficult  for them  to continue                                                               
living in the  community. With a fiscal plan, they  could look at                                                               
increasing the day  habilitation cap and moving  more people from                                                               
the waitlist.                                                                                                                   
1:42:35 PM                                                                                                                    
SENATOR MICCICHE asked if the waitlist prioritizes.                                                                             
MS.  RYAN  said people  receive  points  based  on a  variety  of                                                               
things. People  with higher scores are  placed at the top  of the                                                               
list.  For example,  person whose  caregiver's health  is failing                                                               
might  be placed  higher on  the list.  The state  once drew  200                                                               
people from the  waitlist every year. The state has  drawn 50 the                                                               
last several years. If people don't  get served at the right time                                                               
they go  into crisis and then  they need more services.  It helps                                                               
keep families together when they get the services they need.                                                                    
MS. RYAN said the Key  Campaign has recommendations to reduce the                                                               
cost of  home and community-based  waivers. The  Employment First                                                               
bill helps more  people get to work  so they can pay  for some of                                                               
their services. The  ABLE Act enables people to save  for some of                                                               
their  own expenses.  The durable  medical equipment  re-use bill                                                               
was  passed   several  years  ago.   Key  continues   to  provide                                                               
recommendations  around  the  use  of  technology,  companionship                                                               
services  and  semi-independent  living services.  She  said  Key                                                               
continues   to  believe   that   individuals  with   intellectual                                                               
disabilities  and  their  families have  already  contributed  to                                                               
efforts to reduce the state  budget, such as the day habilitation                                                               
 soft cap"  of 624 hours  annually. Day habilitation is  the only                                                               
service  that  helps  individuals  be   a  part  of  their  local                                                               
communities.  Out-of-pocket expenses  to  care for  a child  with                                                               
developmental  disabilities  is   estimated  at  $8,000  annually                                                               
beyond what  it takes to  raise a  child without a  disability. A                                                               
child with  disabilities is  always going  to need  extra support                                                               
and services.                                                                                                                   
COREY GILMORE,  Advocate, Key Coalition of  Alaska, advocated for                                                               
the Key Coalition priorities. He said  just a moment ago Ms. Ryan                                                               
talked  about the  need for  families  to stay  together. He  and                                                               
Sabrina  Richmond,  his  significant other,  have  been  together                                                               
eight years. His goal in his plan  of care is that he will make a                                                               
difference in his community and the  lives of others. That is his                                                               
job.  On Monday  nights they  present a  Bible story  to a  youth                                                               
group. Neither he nor Sabrina see  very well, so they practice it                                                               
the entire week to memorize the  story to present it to the youth                                                               
group. Wednesdays  and Fridays they  go to  work at the  Auke Bay                                                               
integrated preschool.  They teach kids  the alphabet and  that it                                                               
is okay to be different.                                                                                                        
SABRINA RICHMOND,  Advocate, Key  Coalition of  Alaska, advocated                                                               
for the Key Coalition priorities.                                                                                               
1:50:16 PM                                                                                                                    
MR.  GILMORE said  they are  struggling with  the cap.  They have                                                               
just been  told that  when Sabrina's plan  gets renewed,  she may                                                               
lose  supported living  hours. He  asked Ms.  Richmond where  she                                                               
will end up if she loses supported living hours.                                                                                
MS. RICHMOND said she will go home to Petersburg.                                                                               
MR.  GILMORE  said  her  family in  Petersburg  will  be  totally                                                               
responsible for her care.  He will have to go to  a group home in                                                               
Anchorage.  He cannot  imagine  not having  Ms.  Richmond by  his                                                               
side. He  asked how the committee  would feel if someone  came to                                                               
their  houses  and  said,  sorry  there  is  a  possibility  your                                                               
services will  be cut and  you may have to  be split up.  He said                                                               
stuff like this happens to them  all the time. They don't want to                                                               
just be  in the community. They  want to be of  the community. He                                                               
always says  to the Governor's  Council on Special  Education and                                                               
Disabilities that  life requires audience participation.  If they                                                               
are going to make them  participate, they need the services. Even                                                               
if he works more,  he needs help to get up and to  get out of the                                                               
MS. RICHMOND asked the committee  not to cut day habilitation. It                                                               
helps them to be in the community.                                                                                              
MR. GILMORE said  if they are not at the  preschool, someone will                                                               
have to  explain to  the kids  where Mr.  Corey and  Miss Sabrina                                                               
are.  The  kids  look  forward   to  that  every  week  and  wont                                                               
understand why they aren't there anymore.                                                                                       
MR. GILMORE said he won't understand.                                                                                           
MS. RICHMOND said she also won't understand.                                                                                    
MR. GILMORE said  Ms. Richmond keeps him together  in the morning                                                               
just  like committee  members' significant  others  do for  them.                                                               
Without her  he will  fall apart. He  cannot imagine  living with                                                               
five other  people. This is  the person  who said she  will spend                                                               
her life with  him. This is the  one person who will  put up with                                                               
him that much.                                                                                                                  
MS. RICHMOND responded, "He's right.  He's my other half."                                                                      
MR. GILMORE said  they don't know what her services  will be, and                                                               
they  may have  to take  her away  from him.  They don't  know if                                                               
they'll  see each  other  again. He  knows he  loves  her and  he                                                               
doesn't know what kind of life they can have.                                                                                   
SENATOR MICCICHE  said they  are a  beautiful couple  and amazing                                                               
advocates. He said he didn't know if they choreographed that.                                                                   
MS. RICHMOND said they role play constantly.                                                                                    
MR. GILDMORE  said this  is how they  tell stories  at preschool.                                                               
They  have to  memorize  stories,  but they  didn't  even have  a                                                               
chance to  practice today. They just  knew what they had  to tell                                                               
the committee.                                                                                                                  
MS. RICHMOND expressed appreciation.                                                                                            
1:56:26 PM                                                                                                                    
LINDA THOMPSON, Advocate, Key Coalition  of Alaska, advocated for                                                               
the Key  Coalition priorities. She  said her son, Erik,  was born                                                               
when she trapped at Lake Clark and  she was told to put him in an                                                               
institution.  She took  her child  home. She  has always  been an                                                               
advocate for Erik. She had three children with disabilities.                                                                    
One died due to her profound  disabilities. One is working on his                                                               
master's  in  Fairbanks,  which   is  difficult  with  a  hearing                                                               
impairment. She  is here to talk  about what has happened  to her                                                               
and her  son, who is 40.  He has Down's syndrome,  autism, and is                                                               
an elective mute.                                                                                                               
She said  her son has been  a successful artist for  20 years. He                                                               
has  had art  shows  across  the United  States,  but  now he  is                                                               
changing. He  is becoming elderly, 40  is elderly for him.  He no                                                               
longer sleeps. For over five  years she has been a sleep-deprived                                                               
caregiver. After  collapsing in  November at the  age of  70, she                                                               
applied for  a change  in his  waiver services to  move him  to a                                                               
group  home,  one with  three  shifts  of  people. Due  to  state                                                               
policy, as  soon as she  applied, his  services were cut  from 42                                                               
hours to 15  hours a week. She  said she begged for  the 42 hours                                                               
back but  was told  she must  rescind the  request for  the group                                                               
home. December  21, after  seven weeks  of sleeplessness,  he was                                                               
admitted into  a group home. He  now has a fresh  shift of people                                                               
doing an excellent  job of care, but Christmas Eve  she went into                                                               
the  hospital with  extreme exhaustion.  She does  not understand                                                               
why DHSS did this  to her, cut his hours from 42  to 15. There is                                                               
no logic to that other than saving money.                                                                                       
MS.   THOMPSON   said   decisions    are   being   made   without                                                               
considerations  of the  disabled person  or the  family. Services                                                               
should not be cut when someone  is transitioning into a new home.                                                               
The state saved  money at her expense. The state  did pay for her                                                               
health care because she is a  retired teacher. As a single parent                                                               
she has  no backup except the  state. Now residential care  is at                                                               
her  side   working  together,  but   people  have   decided  day                                                               
habilitation is not  important. She said her son  depends on her.                                                               
Three days a week  she fills in the hours the  state has cut. But                                                               
in  May, when  her  store on  the Homer  Spit  opens, she  cannot                                                               
volunteer  her services.  She sells  Erik's art  and spreads  the                                                               
word  that people  with a  disability can  have a  career and  be                                                               
successful. A cut  in services means increases down  the line. If                                                               
Erik only sits and rocks he  will stay in his imaginary world. He                                                               
needs day  habilitation every day  to get  him out of  there. She                                                               
does  not want  another parent  like herself  to be  put in  same                                                               
situation. Other  parents here  in the  Key Campaign  are getting                                                               
old and need state support, she said.                                                                                           
2:04:45 PM                                                                                                                    
SHELLY  VENDETTI-VUCKOVICH, Advocate,  Key  Coalition of  Alaska,                                                               
advocated for  the Key Coalition  priorities. She said  her claim                                                               
to fame  is that she  is Claire's grandmother. They  advocate all                                                               
over  the state  for  disabled children.  Claire receives  waiver                                                               
services.  At three  months she  was  injured and  abused by  her                                                               
biological parents who nearly killed  her. People think these are                                                               
your  children. It  is your  responsibility to  provide for  your                                                               
children. Yes, for things within  people's normal lives. Everyone                                                               
here is  one catastrophe  away from living  in their  world. They                                                               
spend at least $20,000 a year  for uncovered expenses, but she is                                                               
grateful  for the  services  they do  receive.  Claire was  never                                                               
supposed to  walk or talk.  She dances,  she runs. She  is blind,                                                               
but she is  the light of her life. Day  habilitation helps Claire                                                               
be more  independent for the  day when Ms.  Vendetti-Vuckovich is                                                               
not there.  But she hears stories  like the one they  just heard,                                                               
and  that day  is coming  faster. Claire  is 10.  At dinner  last                                                               
night Claire  fell asleep  in her  lap. She  can no  longer carry                                                               
Claire. She asked  what does she do when she  can't care for her.                                                               
She can't imagine someone coming  in her home and controlling her                                                               
She said it is  all about who they are as  Alaskans, who they are                                                               
in their souls, and what is  important to them. It isn't just her                                                               
family. They are  going to protect everyone in  the community who                                                               
is vulnerable,  whether they are  a child, elderly,  or disabled.                                                               
She  wants to  be  the  person that  her  grandparents were,  who                                                               
provided for  their neighbors. For generations  before, integrity                                                               
meant something. She  wants that in Alaska. The  whole reason for                                                               
a  stable and  sustainable fiscal  plan is  so that  all of  them                                                               
continue to be  Alaskans. She asked them to do  whatever it takes                                                               
to help all of their families. It will benefit all of them.                                                                     
ROBERT FRICK,  Advocate, Key Coalition  of Alaska,  advocated for                                                               
Key Coalition priorities.  He said he has been with  REACH 20 odd                                                               
years. He has worked at Costco  for 18 years. Back in December he                                                               
suffered  a heart  attack. He  was abusing  his health  and REACH                                                               
helped him  realize what  he was doing  wrong. They  stood behind                                                               
him all the  way. He emphasized the need to  continue funding for                                                               
REACH.  Everyone  here deserves  that.  He  said, "We're  a  pack                                                               
2:13:51 PM                                                                                                                    
MS.  RYAN said  the Senate  passed SB  80 last  year, which  is a                                                               
telecommunication bill  that would require telephone  utilizes to                                                               
provide services to subscribers who  are deaf, hard of hearing or                                                               
speech  impaired,  so  they can  communicate  by  telephone  with                                                               
hearing persons.  The Juneau  members of  the Key  Coalition that                                                               
afternoon will  be asking Representative  Kito to schedule  SB 80                                                               
in Labor  and Commerce. She  said yesterday the House  Health and                                                               
Social Services  Committee heard HB 336,  the Supportive Decision                                                               
Making Act.  This would empower  Alaskans with guardians  to form                                                               
Individualized  Supported   Decision  Making   Agreements,  which                                                               
foster greater independence for  adults with disabilities to make                                                               
life decisions with a trusted  team. Thirty years ago, Alaska had                                                               
one  of  the most  progressive  guardian  laws, but  things  have                                                               
changed. They are  hoping HB 336 will move out  of the House soon                                                               
and over to the Senate.                                                                                                         
CHAIR WILSON thanked the presenters.                                                                                            
2:16:19 PM                                                                                                                    
There being no further business to come before the committee,                                                                   
Chair Wilson adjourned the Senate Health and Social Services                                                                    
Standing Committee at 2:16 p.m.                                                                                                 

Document Name Date/Time Subjects
Key Coalition Overview 2018.pdf SHSS 3/2/2018 1:30:00 PM
SHSS March 2 Key Coalition
Key Priorities.pdf SHSS 3/2/2018 1:30:00 PM
SHSS March 2 Key Coalition
Key Campaign Legislative Power Point 2018.pptx SHSS 3/2/2018 1:30:00 PM
SHSS March 2 Key Coalition