Legislature(2017 - 2018)BUTROVICH 205
03/02/2018 01:30 PM Senate HEALTH & SOCIAL SERVICES
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| Presentation: Key Campaign | |
| Adjourn |
* first hearing in first committee of referral
+ teleconferenced
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+ teleconferenced
= bill was previously heard/scheduled
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.;
Member
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
disabilities.
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
house.
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
life.
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
here."
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 |