Legislature(2011 - 2012)SENATE FINANCE 532
02/23/2012 08:00 AM House HEALTH & SOCIAL SERVICES
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| Start | |
| Presentation: 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
HOUSE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE
SENATE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE
February 23, 2012
8:01 a.m.
MEMBERS PRESENT
Representative Beth Kerttula
Representative Bob Miller
Senator Bettye Davis
Senator Johnny Ellis
Senator Dennis Egan
Senator Fred Dyson
MEMBERS ABSENT
Representative Wes Keller, Chair
Representative Alan Dick, Vice Chair
Representative Bob Herron
Representative Paul Seaton
Representative Charisse Millett
Senator Kevin Meyer
OTHER MEMBERS PRESENT
Representative Mia Costello
COMMITTEE CALENDAR
PRESENTATION: KEY CAMPAIGN
- HEARD
PREVIOUS COMMITTEE ACTION
No previous action to record
WITNESS REGISTER
EMILY ENNIS
Fairbanks, Alaska
POSITION STATEMENT: Testified during the Key Campaign
presentation.
MAUREEN PINTNER
Anchorage, Alaska
POSITION STATEMENT: Testified during the Key Campaign
presentation.
LAURIE MATTHEWS
Eagle River, Alaska
POSITION STATEMENT: Testified during the Key Campaign
presentation.
KIM CHAMPNEY
Juneau, Alaska
POSITION STATEMENT: Testified during the Key Campaign
presentation.
JOE HAYES
Fairbanks, Alaska
POSITION STATEMENT: Testified during the Key Campaign
presentation.
SANDRA HORN
Metlakatla, Alaska
POSITION STATEMENT: Testified during the Key Campaign
presentation.
LAEL FORD
Anchorage, Alaska
POSITION STATEMENT: Testified during the Key Campaign
presentation.
DENNIS HAAS
Soldotna, Alaska
POSITION STATEMENT: Testified during the Key Campaign
presentation.
STEVE LESKO, past President
Key Coalition of Alaska
Anchorage, Alaska
POSITION STATEMENT: Testified during the Key Campaign
presentation.
ACTION NARRATIVE
8:01:42 AM
CHAIR BETTYE DAVIS called the joint meeting of the House Health
and Social Services Standing Committee and the Senate Health and
Social Services Standing Committee to order at 8:01 a.m.
Representative Miller and Senators Davis, Egan, and Dyson were
present at the call to order. Representative Kerttula and
Senator Ellis arrived as the meeting was in progress.
Representative Costello was also in attendance.
^Presentation: Key Campaign
Presentation: Key Campaign
CHAIR DAVIS announced that the only order of business would be a
presentation by the Key Campaign.
8:02:54 AM
EMILY ENNIS thanked the committee members for their support, and
stated that that this was a momentous day for the Key Campaign.
She reported that it had been 25 years since the first visit to
Juneau by the Key Campaign, on behalf of individuals who
experienced disabilities and their families, who were waiting
for needed services. She emphasized that, in Alaska, more than
13,000 children and adults experienced intellectual or
developmental disability. She noted that one-third of these
people received services in their home communities, either
funded by Medicaid waivers or state grant funds through the
Department of Health and Social Services. She confirmed that 75
percent of the nearly 880 individuals remaining on the wait list
met the level of care required for placement in a nursing home
or institution, and qualified for Medicaid waivers. She
stressed that people with intellectual and developmental
disabilities had many abilities. She declared that the
ambition, the hard working ethic, the valuing of a job, and the
identity of being an adult contributing to society made these
individuals exceptional employees, good citizens, and good
neighbors. She confirmed that the investment in a home and
community based service system, rather than institutional care,
had made it possible for "the opportunity for inclusive lives in
Alaska's villages, towns, and cities."
8:06:25 AM
MS. ENNIS detailed the difficulties these individuals and their
families coped with in waiting for home and community services,
which would allow them the chance to work, and the chance to
prove their independence. She declared that "life is precious.
If we can help it, not one moment should be wasted, waiting."
8:09:08 AM
MAUREEN PINTNER shared a picture of her 13 year old son, Max.
She declared that her purpose was to tell her family story, and
to encourage endorsement for the funding of $650,000 to the
Complex Behavior Collaborative Consultation and Training Program
(CBC). She declared herself to be "a relentless, volunteer
parent advocate for two of my children with disabilities." She
shared that Max had multiple diagnoses, which included high
functioning autism, severe executive dysfunction, mood disorder,
depression, seizure disorder, and learning disabilities. She
confirmed that this had been exhausting on her family. She
shared the odyssey of admitting Max into the North Star
Behavioral Health hospital and the subsequent realization that
the psychiatric model at North Star was not equipped for
children with autism or learning disabilities. She relayed that
North Star began an investigation for an out-of-state option,
and had discharged Max after three weeks to a no-demands home
bound program, to wait for an opening in a specialized, neuro-
psychiatry, out of state residential psychiatric treatment
facility. She disclosed that Max sat at home for two months,
heavily medicated, with no school services. She shared that her
other two other children found this approach "confusing and
unfair." She reported that Alaska now has an alternative
program for complex behaviors, the aforementioned CBC. She
lauded the program and repeated her request for funding to the
program.
8:14:05 AM
LAURIE MATTHEWS shared that her husband was in the Alaska Air
National Guard, and that she had two children with disabilities.
She spoke in support of the CBC. She shared that her five year
old son, Cole, loved Star Wars, Legos, and snuggling into soft
piles. She explained that he had high functioning autism, with
horrific melt downs several times each day. She described the
crisis mode this had brought on to her family, and that during a
two year span, her family had sought help from a psychologist,
two psychiatrists, and their pediatrician, with none able to
offer the necessary help. She detailed that a recent
alternative to keeping children with extreme behavior problems
at home was now available. She declared her excitement with the
CBC program, as this was an option for children, instead of
being placed in residential treatment. She said her family was
eligible for applied behavior analysis. She said her son, Cole,
was progressing, and learning the necessary skills to interact
appropriately without "defaulting into explosive rages." She
urged support for the services of CBC, and proposed HB 79, which
would require insurance coverage for autism spectrum disorders.
She declared these to be two critical resources.
8:18:04 AM
KIM CHAMPNEY established that she had been a service provider
for people with disabilities for the past 14 years, and that she
was currently the program director at REACH, Inc. She shared
the story of a magnet, which she kept as a reminder to continue
to advocate. She testified in support of the CBC program. She
declared that providers worked hard to make communities better,
and to make a difference. She shared the difficulty of not
being able to provide services, or for a support plan that was
not working. She stated that this was most difficult for the
person with the complex behaviors, who was not able to make
themselves understood. She confirmed the hesitation and loss of
confidence by an agency when support services did not work. She
stated that the CBC provided many solutions that other agencies
were not able to offer. She requested additional funding for
CBC.
8:21:45 AM
JOE HAYES stated that the Key Coalition was not a want, it was a
need. He declared his support for proposed HB 79, expressing
his desire for its passage and confirming his understanding of
legislative decisions for distributing funds. He emphasized
that people's needs and services "should rise to the top, the
quality of someone's life, the dignity that someone must have to
live involved in their community, to assist their families..."
He stressed that any safety net could provide the difference for
holding a family together. He requested support for the Key
Coalition.
8:24:13 AM
SANDRA HORN declared her support for early infant learning. She
shared that she had nine children, with three having received
services from early infant learning. She explained that her son
had failed hearing tests, and had received a referral to an
audiologist. She stressed the necessity to recognize children's
needs early, to "build a better foundation for our kids, for
them to have success and to be really involved and successful
people in our communities ..." She declared that early infant
learning had made a difference in her family and her community.
8:26:47 AM
LAEL FORD, testifying that she lived in an assisted living home,
addressed the problem of the long wait list for assisted living
services. She shared that she had waited for more than two
years for services. She offered her belief that "people with
autism have been put aside, and not given enough medical aid."
She explained that her disability had been recognized, which
allowed her to receive the necessary medical coverage. She
appealed for funding for CBC and for counseling services. She
announced that her adoptive father was wonderful and supportive
for her independence. She stated that "hopefully we can get all
this stuff passed so other people don't have to suffer."
8:29:33 AM
DENNIS HAAS described that his daughter, Katie, had contracted
spinal meningitis at five weeks of age, and that she had 80
percent brain damage. He shared that, although he had been told
that her life expectancy would be about 12 years, she was now 30
years of age. He declared that, as a result of the disability
support programs, she was able to live at home, with 24 hour a
day care. Although she was blind, and did not speak, he shared
that Katie enjoyed her life, shopping, listening to music, and
spending time with friends and family. He described the
pleasures for Katie when her family visited its cabin in Kodiak.
He expressed his worries for what would happen to Katie if
something happened to him. He stated that the current programs
allowed people to stay in their home and community, and receive
care at home. He encouraged continued support for disability
programs.
8:32:40 AM
STEVE LESKO, past President, Key Coalition of Alaska, declared
that he had been with the Key Campaign for all of its 25 years.
He stated:
the people here with me today have been my colleagues,
my associates, my friends, and in so many ways, my
heroes. You see, I don't need Batman and Green
Lantern, and I don't need Superman, because I've got
the real thing in back of me. These parents, these
individuals who experience challenges, have come here
for a quarter of a century, and they have told you
their stories. I think some of you, but not everyone,
realizes that for every story you've heard for 25
years, there's a price that these people pay. I can't
even tell you how many times when something like this
is over, the parent is in the hallway crying, when the
memories come flooding back of broken families,
spouses that have left, siblings that have gone apart,
the family unit disintegrates. The price our family's
pay is pain, and that is an awful thing to exact from
anybody.
MR. LESKO referenced a story about the Good Samaritan told by
Martin Luther King the day before his death, which explored the
necessity to ask the right questions. He compared the ethnic
devaluation of people in this story with the same devaluation
toward people with disabilities today, citing that people are
still shipped out of Alaska because there are no resources here.
He further recounted:
people pass this man by because they ask the wrong
question. They said, 'what will happen to me if I
stop and help him.' Wrong question. We should be
asking, 'what will happen to him if I don't stop and
help him.' It changes everything. If you take the
egocentricity out of it, and you look at our families,
you look at our people experiencing disabilities, and
say to yourselves, as Alaska State Legislature and
administration, 'what will happen to our families if
you don't respond.'
MR. LESKO declared that the [proposed] autism bill [HB 79] had
been called a mandate, and he offered his belief that:
until the day I die, the greatest mandate you have and
I have and we have is to preserve our family unit.
Nothing is greater than that. So, if you want to
prioritize, put our families first as so many of you
have done. We want to just say to you, because of
you, who've been heroes to us too, you have made such
a difference in the lives of Alaskans. Is there
anything else we can do in our lives than to say we've
touched each other? ... When my time comes, I want to
say, as Horace Mann did, I would be ashamed to die
unless I had won some small victory for humanity. On
behalf of my heroes for 25 years, we applaud you; we
applaud you our legislature, for all of the
differences you have made in the lives of our Alaskan
families. ... Our job, if anything else with our
families with disabilities, is to say ... that we care
enough that you don't have to lose sleep and wonder
and ask that question time and time again, what will
happen to my son, my daughter when I am gone. You
will never have to worry about that again. To you,
our legislature, thank you for 25 years of incredible
support.
MR. LESKO, in conclusion, asked that the priorities, including
autism insurance reform and CBC, be addressed and he declared to
the committee: "We love you and we thank you."
8:39:44 AM
CHAIR DAVIS thanked Mr. Lesko for all his service.
8:40:37 AM
ADJOURNMENT
There being no further business before the committee, the joint
meeting of the House Health and Social Services Standing
Committee and the Senate Health and Social Services Standing
Committee meeting was adjourned at 8:40 a.m.
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