Legislature(2003 - 2004)
02/26/2003 08:04 AM Senate FIN
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MINUTES
SENATE FINANCE COMMITTEE
February 26, 2003
8:04 AM
TAPES
SFC-03 # 10, Side A
SFC 03 # 10, Side B
CALL TO ORDER
Co-Chair Lyda Green convened the meeting at approximately 8:04 AM.
PRESENT
Senator Lyda Green, Co-Chair
Senator Gary Wilken, Co-Chair
Senator Lyman Hoffman
Senator Robin Taylor
Senator Ben Stevens
Also Attending: SENATOR BETTYE DAVIS; SENATOR JOHNNY ELLIS; SENATOR
CON BUNDE; SENATOR GEORGIANNA LINCOLN; SENATOR KIM ELTON;
REPRESENTATIVE BILL STOLTZE; REPRESENTATIVE NANCY DAHLSTROM;
REPRESENTATIVE CARL GATTO; Key Coalition Members: MAUREEN MCCLONE
from Anchorage; WYNN LEVITT from Homer; CARY WEBB, from Anchorage;
VIRON WEBB, from Anchorage; JAMIE POLTY from Anchorage; KATHY
MARLEY from Fairbanks; MILLIE RYAN, Executive Director, Governor's
Council on Disabilities and Special Education from Anchorage;
SHIRLEY EVANS from Seward; CARLA NORMAN from Seward; CAT THOMPSON
from Seward; DEBRA BABCOCK from Fairbanks; JASON SCOTT from Eagle
River
Attending via Teleconference: There were no teleconference
participants.
SUMMARY INFORMATION
The Senate Finance Committee, joined by other members of the Senate
and the House of Representatives, heard a presentation from the Key
Coalition Campaign.
Key XVI Campaign 2003 Presentation
MAUREEN MCCLONE, Coordinator, Key Coalition Campaign, thanked the
Committee for the opportunity to make today's presentation. She
noted that approximately 300 individuals, who include family,
friends, caregivers, and medical professionals, were at the State
Capitol today to present a unified voice in support of services for
Alaskans with disabilities. She stated that some of these
participants are attending even though "they are risking their
personal privacy."
Ms McClone announced that the Key Campaign is presenting to
Legislators three recommendations. The first recommendation, she
identified, is that the Key Coalition be allowed to partner with
the State for "a one hold harmless year" to address improved
services and cost effectiveness measures for the Medicaid program.
The second request, she continued, is for the Legislature to
support the Mental Health Trust Authority's $625,000 general fund
request for the Medicaid Waiver Budget Review Unit (BRU). She
reminded that, since 1994, these Home and Community Based Waivers
have provided the matching funds necessary to attract additional
federal monies and have offset, by more than 50-percent, the cost
of services for more than 1,000 Alaskans with developmental
disabilities (DD). She applauded the 1997 closure of the State's
Harborview Institution, and, she noted, that since that time,
statistics support the Coalition's claim that community-based
services and home care are more cost effective than institutional
care, and in addition, allow people to have a better quality of
life. She specified that, on an annual basis, the waiver costs the
State $68,724, as compared to an annual cost of $117,00 for nursing
home care and $183,000 for institutional care. She stated that, in
addition to these savings, funding the waiver program would assist
the State in reducing the waiver program wait list which numbers
approximately 1,500.
Ms. McClone stated that the third request is that the Legislature
support the Mental Health Trust Authority's request for $625,000
for the Infant Learning Program (IFP), as she noted, it is
"recognized" that early intervention improves a child's health and
wellbeing and assists in reducing long-term costs of care. She
attested that these funds would assist in reducing the ILP wait
list that currently numbers approximately 176, and thereby,
positively impact individual's eligibility for pre-school programs.
She stated that this funding would also assist in the recruitment
and retention of qualified program staff.
WYNN LEVITT, resident of Homer, informed the Committee that due to
being granted a Medicaid waiver two years ago, her 25 year-old
disabled daughter who has multiple developmental delays and a
complex seizure disorder, is able to live at home and be involved
in the community. She shared that the waiver allows her daughter to
benefit from 60 hours a week of attendant personal care, which, she
shared, also provides the family reprieve from the stress of
constant care giving. She noted that her daughter's health has
improved, her seizures are less frequent, and that the family's
situation has improved. She asked the Legislators to support the
continued funding of these waivers and to support other DD
programs, such as the Base Grant program. In addition, she urged
that this funding be provided in order to allow people on the wait
list to receive assistance, as she recalled how lonely and un-
supported life was prior to receiving this waiver. She also
attested that training and recruiting of qualified staff is an
important part of the process.
CARY WEBB, Resident of Anchorage, introduced his wife VIRON WEBB
and their foster child JAMIE POLTY. He communicated how Jamie has
positively affected his family's life. He also noted that in years
prior, he had been a student in one of Senator Bundy's classes at
the University, and because of Senator Bunde's teaching, he learned
that people should use their voice to speak to people in authority,
such as the Legislators, as their voice could make a difference.
VIRON WEBB shared that nine-year old Jamie Polty, their foster
child, joined the family four years ago, and she noted that, while
caring for a child with disabilities is a challenge, the family,
which consists of three of their own children, loves Jamie. She
stated that Jamie has blossomed from the therapy and care that the
family is able to receive through the Medicaid waiver program, and
that her progress has improved to a level that "amazes" even her
doctors. She stated that Jamie and other DD individuals and
families all benefit from being on the waiver program, and she
declared that, "the sky is the limit" as far as the advances that
might be possible from the care these individuals receive. She
stated that the waiver program must continue and that providing
care to the 1,300 people on the waiting list should be viewed with
Jamie's accomplishments in mind.
KATHY MARLEY, resident of Fairbanks, stated that she is a mother of
a 23-year old special needs daughter, Lisa. She shared details of
her daughter's medical condition, and how Lisa reaches out to
unbuckle or "free" other people who are in wheelchairs. She stated
that she loves Lisa for many reasons, one of which is for her
"unique perspective of the world around her." Continuing, Ms.
Marley revealed that her daughter is still on the Medicaid waiver
wait-list and, as such, she, the mother, must provide constant
care, and, as a result, has had to resign from her teaching
position. She stated that the situation has taken its toll,
financially and health-wise. She urged the Legislators to fund the
Medicaid waiver and other DD grant funding in order to allow
individuals and families to receive assistance and to help avoid "a
more serious fate."
Co-Chair Wilken noted that the DD wait list is comprised of
approximately fourteen different categories of service, and he
asked the testifier which wait list category her daughter is in.
Ms. Marley responded with uncertainty as to her daughter's specific
DD category.
Co-Chair Wilken voiced that this information would be appreciated
as he noted that further understanding of how people are placed on
the wait list would be helpful.
MILLIE RYAN, Executive Director, Governor's Council on Disabilities
and Special Education, from Anchorage, explained that the Council
"tracks trends and issues that impact people with developmental
disabilities and their families." She stated that "the recruitment
and retention of direct service staff is a major problem not only
for the DD program," but also for mental health and substance abuse
programs. She stated that the caliber of staff affects the quality
of the services, results in health and safety issues, and affects
the continuity of the program. She stated that a survey of current
and prior workers revealed that staffers leave the profession due
to low wages, low social status, and the lack of value that the
general population places on the jobs these workers provide. In
addition, she stated that the situation is acerbated by a lack of
coaches and mentors. She stated that to address some of these
issues, a media campaign is being conducted and that a "whole life"
and leader seminars would be conducted to boost these providers'
knowledge and self-esteem. She voiced support for HB 10 and SB 28,
as these pieces of legislation would assist in providing better
health coverage for these health care providers.
SHIRLEY EVANS, resident of Seward, shared that her 16-year old
daughter has multiple disabilities and requires "help with each and
every activity." She shared that her daughter, Lela, has required
numerous brain, spinal and other surgeries that the family could
not have afforded without the help of Medicaid. She stated that,
while her daughter would require lifelong care, the Medicaid waiver
has enabled Lela to develop self-care skills such as communication
skills and "hand over hand assistance" in setting the table and
preparing lunch and snacks, and it has allowed her to remain living
with her family. She urged the Committee to continue support of the
Medicaid waiver as she stated that were her daughter
institutionalized, the cost of care would be $300,000 per year as
opposed to the cost of the $65,000 waiver which allows her to
remain in her home. She stated that the waiver has provided Lela
with "opportunities to reach her potential and contribute," and she
asserted that, "it is also the most humane, cost effective and
sensible approach." She distributed a copy of her presentation
[copy on file] to the Members.
CAT THOMPSON, Caregiver and Resident of Seward, accompanied by her
35-year old employer CARLA NORMAN, spoke on behalf of Ms. Norman,
who is disabled as the result of an automobile accident she was
involved in at the age of 21. Ms. Thompson communicated to the
Legislators that Ms. Norman had to live for ten years in a nursing
home before she was granted a waiver that has allowed her to live
in her home with the assistance of a caregiver. She stated that Ms.
Norman has learned sign language, participates in physical therapy,
and is now able to walk a few steps and to use her left hand to
eat. In addition, she stated that Ms. Norman has started a business
in which she makes dog biscuits that are sold via local businesses.
She explained that the profits from the business would be used to
purchase a service dog. She declared that Ms. Norman is truly an
amazing woman. She stated that the saddest part of the situation is
that, were Ms. Norman to loose her Medicaid funding, the services
she requires to live in her own home would be lost, and "she would
slide backwards" and "would be forced to become invalid." She urged
the Legislators to remember Ms. Norman when making their funding
decisions.
DEBRA BABCOCK, Resident of Fairbanks, spoke, as a parent and a
professional, regarding the Infant Learning Program (ILP). She
shared that in March of 1993, she became a foster parent to three
brothers whom she subsequently adopted. She stated that the boys
were waitlisted for the ILP, and, when finally accepted, the oldest
brother was only able to receive a few months of assistance, and
therefore, missed the "window of opportunity" that the two younger
brothers were able to receive. Furthermore, she stated that, as the
boys, who suffer from Fetal Alcohol Syndrome (FAS), have grown,
their qualifying for other programs has varied. She stated that she
became an Early Interventionist for the ILP, and she stressed that
early intervention is extremely important to both the child and the
family, and that the collaborative care provided by the
interventionists team is important. She attested that qualified IFP
staff recruitment and retention is difficult, and she noted that,
as a single parent, she has had to take a job with the school
district because it provides better pay and benefits. She pleaded
with the Legislators to support the $625,000 request for the Infant
Learning Program.
JASON SCOTT, Resident of Eagle River, Member of Focus Incorporated
Service Agency, showed the Legislators a picture of his son,
Andrew, who, he shared, began to demonstrate symptoms of disability
at the age of seven months. He noted that Andrew began to receive
ILP assistance at that time; however, he noted that the full extent
of Andrew's disabilities became apparent later on. He stated that
Andrew was waitlisted for Medicaid waiver services for seven years,
and has just begun receiving the waiver from the State. He shared
the difficulty that the family experienced during the waitlist
time, and he detailed the services that Andrew is now being
provided. He stated that at the age of eleven, Andrew is now
experiencing a different range of emotional issues that has "spun
our family into a fair crisis situation," and he noted that the
family is realizing "that Andrew's needs are certainly going to be
lifelong, they won't go away, and that they would be ever-
changing." He concluded that without the support of Medicaid and
other services, Andrew would not be able to live at home. He urged
the Committee to support the three recommendations presented by the
Key Campaign, as he stated, these support systems "must stay in
place," as other options are unavailable.
Ms. McClone stated that the testimony that has been presented is
indicative of the situations faced by people with DD and their
families. She stated that approximately 1,300 people are waitlisted
for the Medicaid Waiver program and that 200 children are on the
ILP waitlist. She stated that this intervention makes a tremendous
difference to the individuals and families being served.
SFC 03 # 10, Side B 08:51 AM
Ms. McClone urged the Legislators to support the Key Coalitions
three requests for the Medicaid waiver program; the ILP; and for
one year of cooperative efforts by the Key Coalition and the State
to address the issues. She thanked the Legislators for the
opportunity to present these recommendations.
Co-Chair Green reiterated Co-Chair Wilken's request that any
specific information the Coalition could supply to Legislators
would be appreciated, as it would further assist them in
understanding the needs of the program.
Co-Chair Wilken asked whether the Key Campaign could provide a copy
of the programs' wait list, sorted both by city and by need.
Ms. McClone responded that the State is endeavoring to revise the
wait list format so that the needs are more easily identified. She
stated that currently, the lists could be sorted by age and by
region; however, she voiced uncertainty as to whether the sort
could be by city.
Co-Chair Wilken asked whether a wait list sort, by city, could be
managed.
Ms. McClone responded that, in addition to this being a human
resource issue, it might be a database issue as people move and
have changes in health status.
Co-Chair Wilken commented that a wait list, sorted by city and
need, would be beneficial, as it would provide Legislators with
meaningful information. He asserted that the current 26-page wait
list consists "of numbers that don't tell you anything." He asked
the Coalition to assist the State with "breaking" the wait list
into meaningful information.
Ms. McClone agreed.
SENATOR GEORGIANNA LINCOLN stated that the Key Campaign has been
presenting to the Legislature for sixteen years. She voiced
appreciation for their sharing of the positive accomplishments that
have occurred, however, she stated that it saddens her to realize
that the Key Coalition must continue to come before the Legislature
and "beg for the services for your loved ones and for Alaska's
future." She voiced appreciation for their efforts, and asked that
they do not to halt their efforts to raise the awareness of these
issues, across the State.
Senator Bunde noted that the Coalition's desire to work with the
Legislature to solve these issues is heartening. However, he noted
that the State's budget deficit is substantial, and that money is
scarce. Therefore, he asked that Coalition members communicate to
their communities that, such things as resource development and
other revenues sources would be required in order to provide for
the needs of the State.
ADJOURNMENT
Co-Chair Lyda Green adjourned the meeting at 08:58 AM
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