Legislature(1993 - 1994)
03/09/1994 08:30 AM Senate FIN
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* first hearing in first committee of referral
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MINUTES
SENATE FINANCE COMMITTEE
March 9, 1994
8:30 a.m.
TAPES
SFC-94, #33, Side 1 (000-550)
CALL TO ORDER
Senator Steve Frank, Co-chair, convened the meeting at
approximately 8:30 a.m.
PRESENT
In addition to Co-chair Frank, Senators Kelly, Rieger and
Sharp were present. Co-chair Pearce, Senators Jacko and
Kerttula did not attend the meeting.
ALSO ATTENDING: Senators Georgianna Lincoln, Johnny Ellis;
Representatives Joe Sitton, Tom Brice, Bettye Davis; Stephen
Lesko, Michael Saville, Virginia Sargent, Elaine Hurley,
Brianna Hurley, Shirley Evans, Gerald Voigt, Howard Hedges,
Duane French, Mark Fresquez; Key VII Campaign speakers; and
Mike Greany, Director, Legislative Finance Division; aides
to committee members and other members of the legislature.
VIA TELECONFERENCE: The following cities were listen only:
Barrow, Fairbanks, Bethel, Anchorage and Hope Cottage.
SUMMARY INFORMATION
Presentation by the Key VII Campaign.
Stephen Lesko, Michael Saville, Elaine Hurley, Shirley
Evans, Gerald Voigt, Howard Hedges, Duane French, and
Mark Fresquez, all testified in support of development
disabilities funds as advocated in the Key VII
Campaign.
CO-CHAIR FRANK announced that the committee would hear a
presentation by the Key VII Campaign. He invited Steve
Lesko, President, Alaska State Association on Developmental
Disabilities, to introduce the various speakers.
STEVE LESKO said this was the seventh year he had come to
the legislature and asked all members of the audience to
stand that had come to speak to the issues of the Key VII
Campaign (a large number of people stood). Only seven
individuals would actually come before the committee to tell
their stories because of time constraints.
He said two "children" would be addressed today. The
"child" of the present which represented those individuals
in existing programs and services. A rumor has been
attached to those existing services that said community
programs and services could be cut, their budgets decreased,
but those people involved always seemed to make it. He
wanted to dispel that rumor. Community services had been
cut for the past five years. The average cost for one
individual in the community developmental disabilities
programs was $16,442 a year compared to the cost of over
$130,000 per year for institutionalization. He stated that
community programs refused to use people as political pawns.
Budgets had been cut, every aspect of their operations had
been decreased that could be decreased, and the community
base was truly eroding. He reiterated that people will not
be put out on the street, and that a commitment had been
made to the people those systems support.
The other "child" represented was the waiting individuals,
549 in total. He held stacks of different colored paper.
Each page numbered represented an individual waiting "child"
in the following region: Southeast Alaska - 101 people that
need services; Northern Region - 143; Harborview
Developmental Center - 10 referrals for release; and
Southcentral - 295 (the largest waiting list). He reminded
everyone that every page not only represented a person but
the family or partners that were also extremely stressed.
In conclusion, he said the Key Campaign had always been
about building bridges among people, and bringing community
to people that have been devalued by society. He wanted to
emphasize that community service was the most cost effective
of any service. He admitted the economy was bad, that
Alaska was in a fiscal crisis, and the state has been forced
to look at some hard priorities. He did not see any other
program as cost effective as $16,442 a person per year. He
pointed out that several years ago, the waiting list was
under 150 and now the list had grown to 549. He said we
care about our Alaskan families and love could build the
bridge - the love of leadership, compassion, caring, and
action. He asked the committee to build a bridge. Didn't
they think it was time?
MICHAEL SAVILLE testified that the cost of living expense
was not going to serve new people, but it was necessary for
existing services. In 1987, community programs had begun to
erode by 16.2 percent. In spite of work accomplishing a net
increase of 6.5 percent, the cost of living increase of 24.4
percent still left services 17.9 percent behind where they
were in 1986.
Another cost to be faced was the 549 people on the waiting
list. Most people agreed that community programs were in
fact the most cost effective use of state money. It was
everyone's responsibility in a crisis to make the most
effective programs for dollars available. The state had an
option to either pay $16,244 a person a year for those
persons on the waiting list plus a 2.8 percent cost of
living, or fail to consider the cost of living and watch the
community programs continue to erode, the health of the
programs disappear, and return to the past and pay $130,000
a year per person. He said a cost of living increase was a
hard reality but pleaded with the committee to preserve
those programs that really saved money and met people's
needs. The alternative was something no one wanted to face.
GERALD VOIGT introduced his wife, Shirley Evans and daughter
Sophie. SHIRLEY EVANS presented pictures of her other
children, Lelo eight years old, and Ashley, four years old,
to the committee. She explained Lelo had been diagnosed
with autism and some mental retardation, and in August 1993,
had finally, after much effort, secured adequate help at
home and school to make family life tolerable. This enabled
the family to act as a unit and keep Lelo at home. The
current program had helped Lelo show real improvement.
Someday, the parents hoped she would be able to live in a
structured, semi-independent, community-based group home.
Unless the progress continued, that goal would be doubtful.
Her disabilities had warranted institutionalization from the
day she was born. The parents had hoped that their care and
love, and support from community programs would prevent
that. To date, the family had given everything possible in
terms of time, energy, money, and commitment to the task.
Without resources from state and federal programs, they
would not be able to continue. Lelo needed constant
supervision and was very self-destructive. Even visiting
extended families down south was very difficult, since one
parent always had to stay behind to care for Lelo.
On February 7, 1994, the level of services had been cut back
resulting in fewer respite hours and a decrease of over 50
percent in Lelo's shared-care hours. Extending her school
day was one way to bridge the gap but it had left the family
on the edge without stability. She said that it was
extremely frustrating to have to be in crisis to get
adequate help, and then, when stabilized, help was reduced,
which threatened to cycle the family again into a crisis
mode. This continual stress cost the family dearly and the
constant worry made it hard to be productive in daily life.
It would be far more cost effective, not to mention humane,
to supply the services needed by her family so they could
provide a loving supportive environment for their child. At
present, the family received about $7,000 in the form of
shared-care monies, or about $19 per day. She explained the
family could barely manage on that amount. Realistically,
the family required twice that amount to maintain a balance,
still far below the price tag of residential services. It
would cost about $133,000 if she were institutionalized or
$365 per day. In spite of the numerous problems the family
faces, they have yet found a place where Lelo would receive
the love, support and nurturing that the family provides.
It was the family's desire to have Lelo live at home so she
had the opportunity to reach her potential. She reiterated
the tremendous difference adequate support would make in
their family life. She said, with the committee's help,
they could be functional, productive, and able to enjoy each
member of their family.
SENATOR GEORGIANNA LINCOLN asked what the difference would
be for the family if they received $40 per day. Mr. Voigt
said it would make a difference in support when Lelo was not
in school. Ms. Evans added that originally the family
received four hours per weekday and ten hours on the weekend
of respite care. Now, the family is receiving two hours per
weekday and only six hours on the weekend. Adequate funding
had provided the family enough in order to maintain. When
that funding was removed, Lelo's progress was stalled and
they feared they would not be able to keep Lelo at home.
VIRGINIA SARGENT, from Kodiak, said that she had a 40-year
old developmentally disabled son who was in the Hope Cottage
program. She said Kodiak was taking care of the children
from these communities: Port Moller, Kaquyak, Seldovia, Fort
Yukon, Tanana, Larsen Bay, Wasilla, Kodiak, Shaviorik, and
False Pass. She would be forwarding 25 letters to the
committee members from those communities. She went on to
say that the Hope Cottage program was in the process of
buying a home some people lived in, and fund raisers were
being held. She wanted the committee to know that the Key
Campaign was not asking for total support. They were
willing to help themselves but could not do it all.
MARK FRESQUEZ, who is deaf, began to sign his testimony to
the committee without speaking. He then stopped, read and
signed his written testimony (see Attachment A, copy on
file). After reading, he fell silent for a long while,
gathering his thoughts. He added that he just wanted the
committee to know that they had the power to make things
happen, to change things. As a matter of fact, he said, it
is all in your hands. He was not there to criticize anyone
because no one was at fault. He suggested people may be
slow in learning the differences between each other and how
we each survived our lives. He hoped the committee would
consider the increment to add services to the deaf in
Alaska.
Steve Lesko than brought a large trophy forward and
explained it had been won at the national level by
Developmental Disability Services in Alaska.
ELAINE HURLEY introduced her daughter Brianna who was in a
wheelchair. Yesterday she had spoken to the Governor's
Council regarding "waivers and options". She explained that
prior to "waivers and options", the way to obtain Medicaid
eligibility for a child was to either impoverish the family
or place the child in a foster home. She and Brenda
Trumbell had both been forced to place their children in a
foster home. She felt that was criminal. In tears, she
explained that her daughter had just returned home but she
had lost a year and a half of their life together. She
stated that the state was paying to keep other children like
hers out of the family home because they did not qualify for
the "waivers or options." She wanted the state to choose
better priorities and put people first.
HOWARD HEDGES said he would like to speak to the Independent
Living Center in Homer and how it had positively effected
his life. He had a stroke almost a year ago that left him
with partial paralysis, left-sided weakness, and speech
problems. He went on to describe his life's career as a
musician, his diabetes, and the inability to qualify for
affordable health insurance. He described his stroke and
the long path back to recovery. Because of the health
system, and his huge medical bills, he had considered
suicide as a way out of his problems. He gave the
Independent Living Center in Homer much credit in helping
him recover and pursue help from other agencies such as the
Division of Vocational Rehabilitation. He wanted the
committee to know that next year the Independent Living
Center in Homer would be staffed only by an answering
machine and benefits would not be provided to people that
truly needed them. He asked for support for the
continuation of this service when it came up for
consideration.
DUANE FRENCH acknowledged that the state was "fiscally
challenged" (putting it in disability terms). The Key
Campaign offered an option and a new direction when tough
decisions must be made, and changes must be made to
services. He felt the way to do that was to move beyond
state bureaucracy and to empower local community programs to
meet the needs of people in those communities throughout the
state. By doing that, the state would be providing services
in the most cost effective way. He noted Michael Saville's
testimony regarding cost of living increases. He said in
the state system, cost of living increases are automatic in
contracts with state employees. The people in community
based programs have been operating in the most efficient and
cost-effective manner possible and have provided services to
far more individuals with disabilities than the bureaucracy
could imagine to provide. The Key Campaign asked the state
to meet the needs of those people and their families on the
waiting lists. He said that the needs of many disabled
people have been met in very creative ways and encouraged
the legislators to give their support.
Co-chair Frank thanked the Key VII Campaign people for
testifying before the committee.
ADJOURNMENT
The meeting was adjourned at approximately 9:15 a.m.
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