Legislature(2011 - 2012)SENATE FINANCE 532
02/24/2011 08:00 AM Senate HEALTH & SOCIAL SERVICES
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| Start | |
| Presentation: Key Coalition of Alaska - Key Campaign | |
| Adjourn |
* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
+ teleconferenced
= bill was previously heard/scheduled
| + | TELECONFERENCED | ||
ALASKA STATE LEGISLATURE
JOINT MEETING
SENATE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE
HOUSE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE
February 24, 2011
8:01 a.m.
MEMBERS PRESENT
SENATE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE
Senator Bettye Davis, Chair
Senator Dennis Egan
Senator Johnny Ellis
Senator Fred Dyson
HOUSE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE
Representative Charisse Millett
Representative Sharon Cissna
MEMBERS ABSENT
SENATE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE
Senator Kevin Meyer
HOUSE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE
Representative Wes Keller, Chair
Representative Alan Dick, Vice Chair
Representative Bob Herron
Representative Paul Seaton
Representative Bob Miller
OTHER LEGISLATORS PRESENT
Representative Mia Costello
COMMITTEE CALENDAR
PRESENTATION: KEY COALITION OF ALASKA - KEY CAMPAIGN
- HEARD
PREVIOUS COMMITTEE ACTION
No previous action to record
WITNESS REGISTER
EMILY ENNIS, Key Coalition of Alaska
Fairbanks, AK
POSITION STATEMENT: Presented report on behalf of Key Coalition.
STEVE WILLIAMS, Program Officer
Alaska Mental Health Trust
Department of Revenue
Anchorage, AK
POSITION STATEMENT: Presented information about the HUB
component of the Alaska Complex Behaviors Collaborative.
JOANNE MASON, Parent
Juneau, AK
POSITION STATEMENT: Related personal stories regarding Key
Coalition issues.
MICHAEL BAILEY, Fiscal Controller
Hope Community Resources
Anchorage, AK
POSITION STATEMENT: Testified for Hope Community Resources.
WENDY CLOYD, parent
Fairbanks, AK
POSITION STATEMENT: Related personal stories regarding Key
Coalition issues.
LORIE KING, parent
Juneau, AK
POSITION STATEMENT: Related personal stories regarding Key
Coalition issues.
DANA GRAHAM, parent
Anchorage, AK
POSITION STATEMENT: Related personal stories regarding Key
Coalition issues.
BARBARA GORMAN, retired school librarian and parent
Fairbanks, AK
POSITION STATEMENT: Related personal stories regarding Key
Coalition Issues.
STEVE LESKO, Key Coalition Member
Anchorage, AK
POSITION STATEMENT: Related personal stories regarding Key
Coalition issues.
ACTION NARRATIVE
8:01:32 AM
CHAIR BETTYE DAVIS called the joint meeting of the Senate and
House Health and Social Services Standing Committees to order at
8:01 a.m. Present at the call to order were Senators Egan, Ellis
and Chair Davis and Representative Millet.
^Presentation: Key Coalition of Alaska - Key Campaign
Presentation: Key Coalition of Alaska - Key Campaign
EMILY ENNIS, Key Coalition of Alaska, said for over two decades
the Key Campaign has come to Juneau to speak for themselves, as
well as for others who cannot speak for themselves. In Alaska
over 13,000 children and adults have a developmental disability
(DD). The Key Campaign believes that a disability should not
prevent a child or an adult from having a full life. A
developmental disability is one that occurs before the age of
22, and perhaps is noted at birth or early childhood, or
acquired from an illness or accident. Such a disability
generally causes substantial limitations and impairments and is
expected to be life-long. Some form of support or service will
be needed, usually life-long. In Alaska over 13,000 children and
adults have a developmental disability. Over one-third of them
are receiving DD services in their home communities, funded
through the Medicaid waiver or Alaska state grant funds. At last
count, around 840 remain on the DD registry, the lowest number
on the DD waitlist in many, many years. The Key Campaign's dream
is that eventually they will end the DD waitlist, and their
dream is coming closer to a reality thanks to the legislature's
commitment.
MS. ENNIS said she would speak about four priorities of the
Alaska 24th Annual Key Campaign. The first is the Alaska complex
behavior collaborative [Hub] component. This establishes a
critically needed expertise to make sure that children and
adults with behavior challenges do not have the leave the state
and their homes and their families to receive the necessary
treatment and services.
The second priority is the autism insurance reform, to make sure
that over 1,500 children in Alaska today with autism are not
excluded from medical coverage because of their autism
diagnosis.
The third priority is a periodic rate review, to assure that DD
community services can continue to meet the needs of Alaskans
with disabilities.
The fourth priority is to maintain Alaska's commitment to
eradicate the DD wait-list in the state.
8:07:39 AM
MS. ENNIS gave an example of the benefits of support from the
state of Alaska, as follows:
Twenty-four years ago an infant boy was born in
Alaska. At birth it was noted that he had many
significant disabilities. His parents were devastated
by the loss of the child that they dreamed of and
looked forward to, yet they loved him deeply and then
began to build the hope that he could have a good
life. Right away they received in home supports and
respite care from a community service provider. That
helped ease their stress and their fatigue, and also
helped them navigate the complex medical service
system. In a short time their infant son was receiving
early intervention services, speech therapy, and
physical therapy. And although he still had delays, it
was amazing to see how well he did when he began
elementary school. His parents still continued to
receive respite care a few hours a week, which they
called their lifeline. It assured that their marriage
stayed strong and that they had time with their other
children. Over the years they had a care coordinator
who continued to help them identify and locate the
needed resources and other services for their child.
By the time their son was 21 years old he was part of
a supported employment program and he had a job coach.
Before long he had his first real job. He was feeling
his independence, and his parents recognized that they
were growing older. Before his 23rd birthday their son
moved into a supported living residence with other
young adults who were learning to live on their own.
Today he volunteers in the community, he works, and he
has a great social life with friends. An agency that
he and his parents selected is now there to support
him, and will continue to do so as his needs change.
His parents feel comfort knowing that he will be fine
after they are gone.
MS. ENNIS thanked the legislature for the services that made
this story possible. Yet, for many other families who wait, she
said this story is only a shared dream.
8:10:04 AM
STEVE WILLIAMS, Program Officer, Alaska Mental Health Trust,
Department of Revenue, Anchorage, said he would discuss one of
their HUB components, the Alaska complex behavior collaborative.
This collaborative took root two years ago. Adults with
disabilities were being sent out of state to institutions
because their behaviors were becoming too challenging for their
caregivers to deal with. Two years ago the Department of Health
and Social Services (DHSS) contracted with the Western
Interstate Commission for Higher Education (WICHE) to take a
look at the depth of the issue and the complexities around it,
and to come up with a set of recommendations to address this
issue.
The Hub component pulls together experts to work on multiple
diagnoses and associated behaviors, so that early intervention
can be provided either in the group home or the community
placement setting or with the family. The target population is
not just adults with developmental disabilities, but also
seniors with challenging behaviors. There are multiple divisions
within the Department of Health and Social Services that aid in
this. The trustees are recommending $500,000 of GFMH to the
governor for the Hub. The trustees have also committed $150,000
of the trust fund for this effort.
8:16:04 AM
JOANNE MASON said she was the parent of a twenty-year old
severely developmentally delayed son who has lived outside of
Alaska for the last four years. Because of the lack of services
in their community, the family was forced to send their child
across the country to help with his severe autism. They took
this drastic step because they were no longer able to cope with
the difficult behaviors of their son's disability. During the
last year, he has learned to cope with his behaviors and to be
successful in a group environment. It was their long term wish
to bring their son home. Today he still has episodes of
challenging behavior, but has grown into a wonderful young man.
Their son recently returned home on Alaska Medivac. She thanked
the governor for helping bring their son home and said they are
now caring for their son. They need help to care for their son,
but they currently have no support. She said it is a blessing,
though, to have him home.
8:19:15 AM
SENATOR DYSON joined the meeting.
8:19:25 AM
MICHAEL BAILEY, Fiscal Controller, Hope Community Resources,
Anchorage, said two questions come to mind: fiscal
sustainability and parity. Having the cost rates of
reimbursement adjusted every few years is very important.
However, regulations change frequently and sustainability is
still in question. He asked that the legislature put in place a
statute that has a cost based methodology. The current DSHS
regulations are a good attempt towards that end, but regulations
change often, and if they change again the sustainability is
still in question. This is why a regular review of rates, using
cost based analysis, needs to be put in statute. Most providers
of these services are nonprofit organizations and they have no
way to absorb losses. The service providers are also looking for
parity in the methodology used by the hospitals and long-term
care institutions to establish rates.
8:22:47 AM
WENDY CLOYD, parent, said she was told 14 years ago to avoid
using the word "autism" in any insurance related paperwork for
her child. When early intervention therapies were recommended,
she was unable to afford them. She said that she did not realize
what she was missing until her child attended a one-week
behavioral therapy session sponsored by the school district.
This makes her wonder what more they could have done if he had
access to services at an earlier age. She asked that insurance
companies treat autism as any other medical need and include it
in coverage.
8:24:55 AM
LORIE KING, parent, said she has a daughter, 20 years old, who
experiences autism. She said that their family's journey along
the autism spectrum began at birth. By fifteen months their
daughter was still not walking, and seemed to prefer being
alone. By age three she was throwing earth-shaking tantrums and
attacking her older sister for no apparent reason. The results
of her daughter's evaluation took a long time, while her
daughter's behavior became worse and worse. She could not be
left alone with her older sister out of fear for their physical
safety. The family started with a diagnosis of ADD, then added
OCD and ODD. Their insurance appeared to be more of a barrier
than a help. No matter how she worked to help her daughter, she
would run into another wall. On top of all of this, her older
daughter was not receiving the attention that she needed.
8:31:24 AM
MS. KING said her daughter was not effectively diagnosed with
autism until she was eight years old. She said that they have
struggled to keep their daughter in their home over the years.
She shared an article with the committee from the University of
Wisconsin in Madison: research found that mothers of children
with autism have the same stress level of individuals in combat.
She urged the committee to support any bill about autism
insurance reform.
8:34:17 AM
DANA GRAHAM, parent, said that she had a daughter who was born
with multiple disabilities that were not diagnosed before she
was born. She said her daughter passed away only 20 months after
she was born. She said imagine being told that you were going to
have a baby, and that child could not see or hear you, and could
not feed without your help. She said this was her daughter, who
was the 16th child diagnosed with Bohring-Opitz Syndrome in the
world. The family was directed to HOPE in Anchorage after many
months of extreme stress in trying to care for their daughter.
At first, she explained, she was apprehensive about the home
visits. Once she allowed HOPE into their home, they became a
huge emotional and physical help for her. She said she does not
know what it takes to fund a service like HOPE, but this
community service helped them exponentially. She explained how
important it was to keep their daughter in their home. She said
that her family no longer needs their assistance, but every day
there is a child that is born or injured and those services are
needed now and in the future.
8:42:48 AM
BARBARA GORMAN, retired school librarian and parent, said she
was there to represent the other end of the spectrum, and the
end of one's life. She has three children, and her family is
geographically dispersed, but they love each other. She
explained that when their son was born they did not know that
they would have expense issues, because they had insurance.
However, the insurance didn't kick in until he was 30 days old
and by that time the family was $50,000 in debt. Because of her
age (85) she is thinking about what will happen to her son when
she is no longer around. When their son was in elementary
school, the local school was not able to deal with him so the
family sent him to a school in Edmonton, Alberta, Canada, where
he spent ten years. She asked the committee to erase the DD
waitlist so that people with developmental disabilities can stay
at home in Alaska.
8:48:37 AM
CHAIR DAVIS said the committee had run out of time, but she
would like to have the final testimony in writing.
8:48:54 AM
STEVE LESKO, Key Coalition Member, presented the committee
members with butterfly pins, and emphasized that everyone can
make a difference.
8:49:43 AM
There being no further business to come before the committee,
Chair Davis adjourned the meeting at 8:49 a.m.
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