Legislature(2003 - 2004)
03/03/2004 08:02 AM Senate FIN
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* first hearing in first committee of referral
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+ teleconferenced
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MINUTES
SENATE FINANCE COMMITTEE
March 03, 2004
8:02 AM
TAPES
SFC-04 # 27, Side A
SFC 04 # 27, Side B
CALL TO ORDER
Co-Chair Lyda Green convened the meeting at approximately 8:02 AM.
PRESENT
Senator Lyda Green, Co-Chair
Senator Gary Wilken, Co-Chair
Senator Ben Stevens
Senator Fred Dyson
Also Attending: SENATOR GEORGIANNA LINCOLN; SENATOR JOHN COWDERY;
REPRESENTATIVE NANCY DAHLSTROM; REPRESENTATIVE BILL STOLTZ;
REPRESENTATIVE REGGIE JOULE; REPRESENTATIVE DAVID GUTTENBERG;
Attending via Teleconference: There were no teleconference
participants
SUMMARY INFORMATION
Key Campaign Presentation
EMILY ENNIS, Executive Director, Fairbanks Resource Agency, told of
the over 250 Key Members present in the State Capitol for the 17th
annual Key Campaign. She listed parents, families, agency
providers, friends, supporters, and children and adults with
developmental disabilities, as those among those participating. She
noted that "hundreds more" were unable to join this event, as they
are unable to speak for themselves. Over the past 16 years the Key
Campaign has been making presentations to the Senate Finance
Committee, she remarked that the legislators have listened and that
their decisions have made a difference. She gave examples of a
toddler with disabilities who would have a better chance at life,
and the parents of a newborn with severe brain damage, or a child
severely injured in a car accident, who would have access to
services such as respite care, in-home support and chore services.
Ms. Ennis defined disability as a physical or mental impairment
that limits or restricts major life functioning, which could be
mobility, self-care, language, or the ability to hold a job. She
continued that developmental disability happens before the age of
22, is usually life long and causes substantial impairments. In
Alaska, she reported that approximately two percent, or 12,000 to
15,000 residents could experience a developmental disability of
substantial nature, and require services over the course of their
lives. She expressed hope these individuals could receive services
to allow them to remain in their homes and in their communities.
Ms. Ennis compared the "handful" of services available in 1974 when
she began working with disabled people. She recalled that parents
provided care for their disabled children, despite questioning from
their doctors, family and friends. She stated these parents had no
training, respite care, or medical assistance; yet she expressed,
"there was hope."
Ms. Ennis told of the development of programs to assist people with
developmental disabilities that have received national acclaim. She
feared that efforts made to date would be compromised with
inadequate funding to sustain these programs.
Co-Chair Wilken asked about changes of the Department of Health and
Social Services to reduce the length of time those needing services
spend on the wait list. He requested the status of these efforts
and whether they are successful and provide a measurement of
success.
JOHN HARRIS, Wasilla, testified that he was born in Alaska and has
four children, the youngest of which has autism. He referenced a
handout [copy on file] detailing his son, Aaron's condition and
treatment needs. He spoke to the financial constraints and the
significant impact of any assistance. He stated that with the early
intervention and diagnosis of the Infant Learning Program his child
would likely be mainstreamed into school and society. He spoke of
the inability for others to understand what his situation is like,
comparing this to the cancer suffered by his wife.
CINDY TURNBOUGH, Fairbanks, testified about her daughter, Clair,
and the virus that calcified Clair's brain during her pregnancy.
She told of the joy that Clair has brought to the family, as well
as the fear of not knowing the extent of Clair's disabilities. She
also described the medical care necessary for Clair's care,
including oxygen, a feeding tube and "suctioning". She told of the
Complex Medical Care Waiver and the services provided by the
Fairbanks Resource Agency and the Special Education Service Agency
(SESA) to ensure Clair could live up to her potential, such as in-
home respite care, four surgeries, a wheelchair and travel for
medical treatment. She stated this assistance helped her family
adjust to Clair's situation. She indicated she would support taxes
and offered to relinquish her permanent fund dividend, as she did
not think the payments are entitlements. She remarked that her
friends agree. She pointed out that there is no "Dr. Spock" book on
how to raise Clair and that her family has had to learn this
themselves. Ms. Turnbough exclaimed that Clair "fights to live
through every illness" and that she has the right to live her life
to its fullest potential. She understood budget decisions are not
easy.
Co-Chair Green noted the Committee recently reauthorized the
extension of the SESA program and she was grateful to hear of a
situation where the program is being implemented.
PAT BUONGIONNE, Delta Junction, introduced his wife Griselda and
his son, Robin, who was diagnosed at birth with Downs Syndrome. He
told how the Tanana Chiefs Conference and its family services have
been a positive presence in his son's life. He detailed the
therapeutic and medical equipment provided to them at no cost. He
furthered that Robin receives a set amount of funds through the
Core Services Program to help with educational, medical,
nutritional and respite care. He noted that Medicaid does not cover
nutritional support because it is classified as alternative
treatment. He hoped these services, many of which are provided in
Alaska but not in other states, would not incur funding reductions.
He expressed desire that there were no disabled children, but
"there are and they are with us." He was hopeful for continuation
of these programs in the future.
Senator Lincoln asked if the family traveled to Fairbanks to
receive services from the Tanana Chiefs Conference, or whether
services were brought to their home.
Mr. Boungionne replied that a speech therapist travels to their
home, although they have traveled to Fairbanks to receive some
services. He also told of grants received to upgrade a room in
their home for therapy use. In addition, he stated that because of
concerns about a nearby creek, funds were provided to build a fence
to prevent Robin from fall in.
Senator Lincoln hoped that in her lifetime, people would not have
to travel to Juneau to request services, because the services would
be provided.
KIM SIMPSON, residential habilitation provider for FOCUS, Inc. in
Chugiak, formally known as a foster care provider, read a letter
from Aubrey as follows.
Thank you for being a key to my success. My name is Aubrey and
I'm two years old. I've been receiving services under the
Children with Complex Medical Conditions (CCMC) waiver through
FOCUS, Inc. for the past year. And oh, what a year it's been!
I've gained 7 1/2 pounds and grew 4 inches. I've learned how
to sit up, crawl and pull myself up on the furniture. I only
had to stay overnight at the hospital five nights, we went to
the emergency room a couple of times, but they let me go home
with my Mom and Dad. I didn't have to have any surgeries this
year! I was even healthy enough to visit my other Mom, Dad,
sisters and brothers in the village. I have so many people who
love me, care for me, support me, teach me and keep me safe.
Some people come to our house, but Mom has to drive me to
other places. They watch my weight, how much I eat, take
pictures of my heart, give me shots and take my blood - not
fun. They're also teaching me to eat, walk and talk, I'm
learning sign language and how to play with other kids. Now
that's fun. I love Elmo and Nemo, looking at books, taking
baths, listening to Mozart and playing with all my toys. When
Mom and Dad need a break, I go to Saige's house. She's my
respite provider and she's really nice. The nurse from FOCUS
told Mom that I have the CCMC waiver for another year, as long
as there is money. I know I'm getting all the help I need, but
there are other kids who need help and have to wait. Please
don't make them wait: they need help, too.
Thanks again, and we'll see you next year, Aubrey
Ms. Simpson told of Aubrey coming to her home and concerns about
the impact on her other children if he died while in their care.
However, he has improved and the hole in heart is closing on its
own. She reported Aubrey is receiving speech therapy and other
services, but still experiences some seizures. She told of the
patience, and appreciation of little things she has learned from
Aubrey.
DENNIS HAAS, Soldotna, introduced his friend, Roger Randell and
told Roger's story, beginning ten years ago, of his father buying
22-year old Roger a mobile home, moving Roger in and then leaving
town. Mr. Haas stated that soon afterwards, "rowdy" teenagers moved
into the trailer, ate Roger's food and took his money. Luckily, Mr.
Haas reported that concerned citizens stepped in and signed Roger
up for services. Told of the closure of the Harborview residential
treatment facility and placement of residents back into their
communities when possible. He informed that for those remaining,
most who had many needs, property was purchased and a home was
built and that Roger was able to reside there. Mr. Haas commented
that neighbors expressed concern at first, but now embrace these
residents.
Mr. Haas continued that Roger's goals included home ownership and
marriage. With the receipt of a sizable dividend from the CIRI
Native Corporation, of which Roger is a shareholder, Mr. Haas
reported that Roger, was able to make a down payment on a home and
plans to marry Molly this spring. Mr. Haas emphasized that the
amount of funding necessary to assist Roger and Molly has decreased
each year and would continue to do so.
Mr. Haas noted that people with disabilities are like everyone,
they shop, pay taxes and enjoy society. He shared the Key Coalition
believe that the community is a place for everyone and that
individuals who experience a disability have the right to live in
the community. He furthered that individuals and their families
must have the power to assume a meaningful role in their community.
He stressed that government has a primary responsibility to provide
a realistic, non-intrusive, non-segregating community for all of
its citizens.
CYD BARTEE, Anchorage, testified about her six year old son, Jerry,
diagnosed at age three of PICA, ODD, and autism, after she suffered
multiple injuries at his doing. She spoke of her difficulty in
deciding to take him to a doctor, and the feeling of failure as a
parent. She stated that her son requires 24-hour care due to his
violence toward himself, his younger brother, family pets, other
children and caregivers. She brought a pumice stone to demonstrate
teeth marks Jerry made in it when left in the bath unattended for
three minutes. She understood that had she intervened with
treatment earlier, Jerry's prognosis would be better, but stressed
that he has made progress. She told of developmental disabilities
experienced by her four year old son and the success he has
realized through treatment.
SFC 04 # 27, Side B 08:49 AM
Ms. Bartee stated that Jerry qualified for (CCMC) waiver because he
is violent. She told of the treatment he is now receiving, and the
significant medication he takes. She expressed, "I am drugging my
child so he can remain in society." She stressed that Jerry has
high potential despite his horrible behaviors. She warned that if
she were not provided the services necessary to assist her son, he
would become a burden and would be unable to contribute to society.
She furthered that if this occurred, she would become a burden as
well. She did not want her family diminished and told of efforts
they have made, including moving into her in-laws home. She also
detailed Jerry's communication improvements, and described them as
an incredible experience. She admitted that the State spends a lot
of money on Jerry and commented that she does not deserve to
receive a permanent fund dividend because of this. She requested
that funding for these programs not be reduced any further.
STEVE LESKO, Anchorage, testified that it is bittersweet that the
Key Campaign has had to lobby the legislature for so many years. He
expressed no doubt that the delivery of services in Alaska is
second to none in the nation. He attributed this to the efforts of
the legislature, the various gubernatorial administrations,
families and service providers.
Mr. Lesko told about his reasons for moving to Alaska and remaining
here. He stated the Alaskan spirit has allowed the creation of
service systems, along with the ability to learn from mistakes made
in other states, such as the institutionalization of those
suffering from developmental disabilities.
Mr. Lesko pointed out that the increased spending for the (CCMC)
waiver program is not all due to "people". He indicated that
funding transfers to the Medicaid program were made to garner
additional federal funds.
Mr. Lesko expressed that there is no recidivism in developmental
disabilities. He added that with effective delivery of services
costs can and do decrease. He remarked that "all of us" have a
challenge to provide a soft landing for a "rainy day" when oil
revenues decline. He surmised that communities and neighbors are
willing to make sacrifices to allow continuation of programs. He
encouraged broad based taxes, and a reduction in permanent fund
dividend payments. He suggested, "Together we can solve this."
Ms. Ennis concluded by thanking the Committee and shared photos
demonstrating that community builds life.
ADJOURNMENT
Co-Chair Lyda Green adjourned the meeting at 09:05 AM
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