Legislature(2001 - 2002)
03/15/2001 07:59 AM Senate HES
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ALASKA STATE LEGISLATURE
SENATE HEALTH, EDUCATION & SOCIAL SERVICES COMMITTEE
March 15, 2001
7:59 a.m.
MEMBERS PRESENT
Senator Lyda Green, Chair
Senator Loren Leman, Vice Chair
Senator Bettye Davis
Senator Gary Wilken
Senator Jerry Ward
MEMBERS ABSENT
All members present
OTHER MEMBERS PRESENT
Senator Kim Elton
Senator Johnny Ellis
Senator Reggie Joule
COMMITTEE CALENDAR
Key Campaign
WITNESS REGISTER
Mr. Carl Evertsbusch
Center for Human Development
University of Alaska
Anchorage AK
Lori and Tim Moore
Kake AK
Ms. Sam Bush and son, Isaac
Fairbanks AK
Mr. Rick Howard
North Pole AK
Ms. Linda Thompson
Mr. Eric Behnke
Homer AK
Mr. Arthur Walters
Seward AK
Lisa and Jerry Wangberg
Wasilla AK
Ms. Lisa Klessens
Eagle River AK
Mr. Steve Lesko
Eagle River AK
ACTION NARRATIVE
TAPE 01-22, SIDE A
Number 001
CHAIRWOMAN LYDA GREEN called the Senate Health, Education &
Social Services Committee meeting to order at 7:59 a.m. and
announced a discussion on the Key Campaign.
MR. CARL EVERTSBUSCH, Center for Human Development, UAA, said
th
this is the 14year they have testified at the capitol and there
has been much done to improve the lives of people with
developmental disabilities. One of the most notable of those was
the closure of Harborview Developmental Center in 1997. "With
that closure came the total commitment to serve people with
disabilities and their families in their homes and communities."
He said another milestone was the adoption of Medicaid waivers,
which currently provides the means to serve over 700 Alaskans in
the places they choose. This year, Mr. Evertsbusch explained,
they have reached another milestone:
Nearly 1,100 families are waiting for the services that
are critical to their well-being. Never before has this
number been so high. More tragic still is even if
funding miraculously appeared tomorrow to serve these
1,100 Alaskans, the service delivery system has the
capacity to serve only 82. This is not good news. But
while people wait, children become sicker; families
become more fragile; aging parents become older;
serious problems occur. What follows is far more
expensive: hospitalization, out of home placements,
incarceration; and more tragically, lives are
destroyed. We are nearing the breaking point. We are
asking for $750,000 to begin fixing the system that we
have already built to capacity to serve these 1,100
families. The promise of Medicaid waivers for the
valued services [provided] around people in their homes
and communities and to put those people in control of
their services will be lost if we don't make the
repairs. And believe me, lives will be lost.
More bad news is we hear that $700,000 for infant
learning we have been asked to shift from interagency
receipts to general funds and this is not new money to
serve 316 infants on the wait list, is at risk for
being passed over. Will Alaska deprive 316 babies of
these critical services? The answer must be no.
MR. EVERTSBUSCH also informed the committee that another serious
matter was preventative and restorative dental services for
adults with developmental disabilities.
These services are currently not covered under the
Medicaid insurance program. The Key Campaign solidly
backs the Governor's Council request for $250,000 to
pilot a partnership with Alaska's dental community that
will provide affordable basic dentistry to adults. The
health benefits of healthy teeth are well documented.
The Key Campaign also supports SB 133, which would
assure students receiving special education would have
fair opportunity to earn a diploma while continuing to
participate in state-wide standards testing. We urge
that the final version include the three priorities of
the Council's recommendations.
He said the Key Campaign has total support for universal newborn
hearing screening. This would provide early detection to 30 - 40
infants annually.
MS. LORI MOORE said she lived in Kake and her special little girl
is Xandi and is five years old and was born with a tumor on her
face. At three months she developed seizures and she is
developmentally delayed.
Mr. TIM MOORE said he wanted to speak on Xandi's behalf and that
of infants who are on the waiting list for Infant Learning
services. They now have seven children, but when Xandi was born
they could tell she was not developing the way she should and
with no hope or knowledge about what to do about their child's
development, they were introduced to the Infant Learning Program
when she was about 12 months old. "The Infant Learning Program
was almost like our savior when they came in."
He said that the infants on the waiting list should not have to
wait another day, because one day to an infant is like a year
with an adult in developmental delays. He urged them to fund
additional monies to take care of the ones who are on the waiting
list.
Number 161
MS. SAM BUSH said her claim to fame was that she is Isaac's mom.
Isaac said he is a junior in high school and a staff sergeant in
JROTC. He read a prepared letter to the committee. He said that
math and English were hard for him, but he gets good grades for
his work. The exit exam could keep him from getting a diploma and
he supported changes so that he could.
CHAIRWOMAN GREEN said that they had spent nearly four months
working on it and she thought he would like the changes.
MS. BUSH said that Isaac has many friends at school and that he
is a graduate of an Infant Learning Program in Fairbanks. When he
was born, there were so many things wrong with his body that she
was told he wouldn't be with her long. She credits the first
three years of his life with getting him off to a good start when
Project Teach came to their home once a week for an hour. The
time they spent with the family made a tremendous difference. She
said she had other grown children:
…but, maternity had nothing to do with how you handle a
child with all these special needs. If it hadn't been
for that Infant Learning Program, I don't know what we
would have done. It obviously got him off to a good
start. The wait list now is obscene. It's terrible that
babies and infants have to wait until it's almost too
late. Eighteen months of age is almost too long to
wait. Three years is even longer. There was money in
the budget last year and somehow it didn't get down to
us. It got lost because of the way it was
appropriated….
Number 264
MR. RICK HOWARD, North Pole, said his son, Sydney, was 9 years
old and was diagnosed as autistic at three years old. He said
that they sought help and found programs, but they had no
funding. "So we're on a wait list."
He said they were told there is a learning window between the
ages of 3 - 5 while they were waiting. "Well, this window is
being passed and I just wonder how much more of my son we could
have gotten back if we could have used this early intervention
during this window time."
He concluded: "The money is needed for these kids and they can't
afford to wait."
CHAIRWOMAN GREEN said last year the budget was provided and their
instructions were that this money could be used for these
services and after they adjourned, they heard the money couldn't
be used for that.
MS. LINDA THOMPSON, Homer resident, said that she raised Eric
Behnke in the bush and he is a successful story for them to hear.
She is a certified teacher and always had something going on at
home for him until they moved to Dillingham. In 1997, when he was
20, she got a job in Copper River and they moved to a road
school, which is where things started to unfold for him. He was
diagnosed with autism, Down's syndrome, and he's also an elected
mute (He will only talk to certain people in certain
environments). He's a very successful artist and sells works in
11 art galleries including Washington DC and Boston. She had the
help of Kenny Lake vocational rehab people and Miller House
Developmental Disabilities people.
In 1998 she lost her job because she was not a tenured teacher.
She was able to get a job in Kenai Peninsula School District and
Homer. Eric needed a safe environment while she worked and
eventually he was approved for a waiver, but the money didn't
come until summer. So she went through an entire year without
help. She said it is a lengthy process to get a waiver and urged
them to find a way to speed it up once the money is there.
CHAIRWOMAN GREEN asked if the delay was from state or federal
overlay.
MS. THOMPSON replied that she didn't know, but she did know that
the community "chipped in" and got her through this period.
MR. ARTHUR WALTERS said he was diagnosed with a moderate to
severe hearing loss at the age of 2 and a half. He was also
diagnosed with a form of juvenile diabetes. He lost his sight at
age 19 due to the diabetes and relies on providers to assist him
in everyday living. He wanted to talk about 2 issues. He had a
difficult transition when he became blind and had only 12 hours a
month of respite care at first. He now has a Medicaid waiver,
which helps him in all the ways he needs to be independent and
productive.
He said one day he waited for his provider to take him to the
grocery store, but he didn't show up. He had quit and went to
work for a coffee shop where he was paid more. He said providers
are dedicated people who leave their families to help people like
him. Mr. Walters said he waited three days to be taken to the
grocery store at that time because no one was available.
He also said there is not enough training. Sarah Souders who was
with him today and had been with him for the last six years,
didn't have any training. He said that providers need the
training so that they can feel confident that they can handle a
client who might be blind and communication problems too. He
concluded: "If nothing is done today, tomorrow will be too late."
SENATOR WILKEN asked if care providers were also known as
personal care attendants.
MR. WALTERS answered he thought they were.
SENATOR WILKEN asked what agency provided that service.
MR. WALTERS answered from CD Community Services in Seward. He
said they have a hard time recruiting, retaining and keeping
providers, because they are only paid $8 per hour without
benefits.
Number 473
MR. JERRY WANGBERG said they were from Wasilla.
MS. LISA WANGBERG said they appreciate the difficult talk of
working on a budget and urged them to take care of people with
special needs:
As the late great Martin Luther King, Jr. said, I have
a dream. How awesome it would be to be a state that is
at the forefront in its care of all individuals, that
all individuals can dream of reaching their fullest
potential, not being told they can't or we don't care
enough to try.
She supported churches and families rallying around each other
during times of need, but the special needs are issues beyond
their expertise. Highly trained individuals with training and
equipment need to be available. Parents want to learn what they
can do for their children. The Infant Learning Program was
invaluable to them, but it needs help, she said.
MS. WANGBERG said that you can't get insurance for these children
and if you have some, there is a big battle to get unique needs
met. She urged them to fund at least the $750,000 from last year
and look at the overwhelming infrastructure needs of provider
services to special individuals and families. "Communities are
growing and so are special needs, but service provider agencies
have not. They are suffering and we will too, if we don't find a
way to help them…."
MS. LISA KLESSENS said she was speaking on behalf of her three
children. She supported the Infant Learning Program (ILP) and the
Medicaid Waiver System. Her son, Spencer (9) is autistic and
received services from the ILP. Because of the early assistance
he received, he is now in a regular third grade classroom with
little assistance.
Her second son, Chandler, is two years and is probably autistic.
He currently receives services from the ILP for the same things
as Spencer and they hope he will do as good as he is. Their
daughter, Morgan, (5 1/2 years) has a genetic storage disorder
and also received ILP services as early as five months. She
received a Medicaid waiver that provided equipment necessary to
take care of her medical needs, in-home support, and staff
support.
Number 562
MR. STEVE LESKO, Eagle River, said he had been coming before them
for 14 years. He said they had accomplished a lot. One of the
things Alaska has done is close down all their institutions.
Once upon a time, there was a state institution and its
cost exceeded $125,000 per day per person. Our
community programs which are left, the heart of our
service delivery service system costs, are far less
than half that. And then a good thing happened in the
terms of history. Waivers came in and waivers took in
the visuals and service delivery that captured 100
percent general funding and got 50 percent Medicaid
funding.
Eventually the funding was a 60/40 federal/state mix. Millions of
dollars were saved and not reinvested in the program; they went
other places in the budget. He said the stories they have heard
today represent legitimate needs.
TAPE 01-22, SIDE B
MR. LESKO said:
Our community programs are truly in crisis. Over the
past decade, our base grants and community services
have received less than one percent cost of living. How
do you survive cut to the bones, trim government? We've
cut to the bone in community programs and it hurts and
we're bleeding and we're in crisis and we've got to
have your help.
The second thing is when we started out Key Campaign 14
years ago, you worked with us and we had a wait list of
125 people and we all certainly said 125 people are too
many. Today, we have about 1,100 on our waiting list.
That's a shame. That's a tragedy, because if you're
fiscally conservative and in my maturity, money is
important. It is important how you spend it. Cost
effectiveness is in community-based program. If we
don't address crisis now, people will be incarcerated;
people will be put back in nursing homes; people will
be in our penal system and on the streets. All I'm
going to ask you today is one part of the budget from
my perspective is in the Governor's capital budget for
$750,000. It's a C for what we call systems reforms.
It's under the title of developmental disabilities
systems reform initiative….Programs will serve more
people effectively, with quality and with safety, not
haphazardly and not by chance.
He said there needed to be systemic reform in the Medicaid waiver
system to streamline billing, to process the preauthorizations
quicker and to stop the community crisis in cash flow. He begged
them to maintain the $750,000 in the Governor's capital budget.
MR. EVERTSBUSCH thanked the committee members for listening to
their stories:
The small amount of money we are requesting will go a
long ways towards guaranteeing the promises of Medicaid
assuring that all Alaskans at risk for developmental
delays receive the services they need in the early part
of their lives, creating a dental care system that will
assure good dental health for thousands of Alaskan
adults. We support the fair opportunity for all
students to receive diplomas upon graduating from
public schools and the establishing of universal
screening to provide parents with the information they
need to help their children avoid unnecessary delays…We
believe these are modest requests…
CHAIRWOMAN GREEN thanked everyone for participating and adjourned
the meeting at 8:50 a.m.
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