Legislature(1995 - 1996)
03/13/1996 08:35 AM House HES
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JOINT HOUSE & SENATE HOUSE, EDUCATION AND
SOCIAL SERVICES COMMITTEE
March 13, 1996
8:35 a.m.
HOUSE MEMBERS PRESENT
Representative Cynthia Toohey, Co-Chair
Representative Con Bunde, Co-Chair
Representative Tom Brice
Representative Caren Robinson
HOUSE MEMBERS ABSENT
Representative Al Vezey
Representative Gary Davis
Representative Norman Rokeberg
SENATE MEMBERS PRESENT
Senator Lyda Green, Chairman
Senator Johnny Ellis
Senator Judy Salo
SENATE MEMBERS ABSENT
Senator Loren Leman, Vice Chairman
Senator Mike Miller
ALSO IN ATTENDANCE
Representative Kim Elton
COMMITTEE CALENDAR
Presentation by "Key Campaign"
WITNESS REGISTER
The following Key Campaign members related their personal
experiences with various programs:
MARY JANE MICHAEL
2421 Wellington
Anchorage, Alaska 99517
LYNETTE HAAS
PO Box 2434
Soldotna, Alaska 99669
HONNEN MCLEOD
6908 E 16th #A
Anchorage, Alaska 99504
EMILY ENNIS
5743 Chilkoor Drive
Fairbanks, Alaska 99709
JOHN MINANO
805 Airport Road
Fredricks, Alaska
P. J. CARPENTER
PO Box 84392
Fairbanks, Alaska 99708
KRISTY POLLARD
PO Box 1715
Ward Cove, Alaska 99928
ROB KLEE
401 Windfield
Anchorage, Alaska 99515
TERRY LANDALL
3781 Cottonwood Way
Wasilla, Alaska 99654
JOHN STREET
6486 Laser
Anchorage, Alaska 99504
LOIS WELCH
PO Box 835
Kenai, Alaska 99611
ACTION NARRATIVE
TAPE 96-18, SIDE A
Presentation by "Key Campaign"
Number 001
CHAIRMAN GREEN called the Joint House & Senate Health, Education
and Social Services (HESS) Committee to order at 8:35 a.m. and
invited the first speaker forward to begin the presentation.
MARY JANE MICHAEL, Key Campaign member, began by noting that this
is the ninth year of the Key Campaign. She believed that community
based programs for people with developmental disabilities have a
proven record of making a difference in the way government
operates. State government wants services to be delivered to
people throughout communities, stimulating rural economies and
community involvement. Currently, 33 nonprofit organizations
provide services and support to over 2,100 people with
developmental disabilities as well as their families in over 170
communities throughout Alaska. Ms. Michael pointed out that 100
percent of the community developmentally disabled programs support
708 non-state positions in rural and urban Alaska. Today people
can remain with their families in their own communities while
receiving the necessary and critical supports and daily life skill
opportunities. She acknowledged that state government is
constantly seeking quality and cost effective services and
programs; community based programs have achieved that.
MS. MICHAEL informed the committee that costs have decreased from
a high of over $25,000 per person to $13,827 per person which is no
comparison to institutional costs that exceed $150,000 per year.
She noted that state government wants welfare reform, "get people
off the dole," which could happen with community based programs.
If families are assisted in staying together, costs are reduced,
the family is healthier and allowed to continue to work.
Furthermore, the community grows and expands with the richness of
diversity and the community's economy is stimulated with community
based programs. Over the past nine years, Key Campaign has
advocated system change which has contributed to savings for
Alaska. The development and implementation of the Medicaid waiver
programs has allowed Alaska to recapture valuable federal dollars
to finance what was once funded entirely by Alaska. Moreover, the
closure of Harborview Developmental Center will result in the
savings of millions for Alaska.
MS. MICHAEL believed that the legislature and the Key Campaign have
made progress in these issues while providing families the quality
supports they need and want. However, there are still 658 people
on the waiting list for community services. For no additional
funding, these individuals on the waiting list can be served by the
savings realized from the closure of Harborview Developmental
Center. Ms. Michael emphasized that the closure of Harborview
illustrates the continuous efforts to deinstitutionalize Alaska
while providing a higher quality of life in the community. Also,
the savings realized through the process of refinancing home and
community based waivers could be used to serve those on the waiting
list. Ms. Michael explained that federal funds offset the cost of
services which were once funded entirely by the state; this can
save the state one half of the current cost of services. The state
money that is freed by the federal funding can be used to serve
those on the waiting list.
MS. MICHAEL stressed that the 658 on the waiting list for community
services is the highest in Alaska's developmental disability
history. Many of those waiting have been on the list for over four
years. If families are diverted from the wait list or need is met
when it first surfaces, the cost for services would be
significantly cheaper than responding to a crisis driven system.
Ms. Michael pointed out that the estimated savings for this year
could serve 100 of those on the waiting list. Ms. Michael asked
for a maintenance of effort of 2 l/2 percent for existing community
programs and services. Ms. Michael quoted the following from a
letter from the Mental Health Trust Authority: "A double standard
has been set when certain cost increases for state agencies are
funded, while no cost increase for nonprofit organizations that
provide direct services to people are funded and in some cases
decrements are taken. Additionally, when Medicaid waivers came on-
line in Alaska the state work force expanded by over 10 positions
to handle the new system while community agencies who are
responsible for assimilating the system, getting people refinanced
on the waiver, and constructing a new billing system with increased
demands were given no new personnel." Ms. Michael reiterated that
no additional money would be necessary with the 2 l/2 percent
maintenance effort. Community makes sense fiscally and
programmatically, we all win with community.
Number 175
LYNETTE HAAS introduced her 14-year-old daughter, Katie, to the
committee. She discussed her daughter's success with the programs
in which she has been involved. Katie's first success was with the
Infant Learning Program. Currently, Katie is receiving services
from Difficulty in Care. Ms. Haas pointed out that because of the
services offered, her family has stayed together. Katie began
using the services when she was three. Ms. Haas felt very
fortunate and yet guilty for receiving services when so many others
in need were waiting. She hoped that the committee could see that
returning the savings from the closure of Harborview to the
programs would be in the state's best interest.
REPRESENTATIVE TOOHEY mentioned the response to the first
announcement of the closure of Harborview three years ago. There
are a few people in Harborview who will continue to need special
care. Representative Toohey emphasized that the closure of
Harborview is necessary and the financial savings will be
tremendous. LYNETTE HAAS reiterated that the savings from the
closure of Harborview could help many more people in the meantime.
REPRESENTATIVE TOOHEY emphasized that change is difficult to
accept. LYNETTE HAAS agreed and said that for this population,
time is very important. Ms. Haas was certain that if Katie had to
wait four years, her family would not have survived.
Number 224
HONNEN MCLEOD from Anchorage, said that she was representing
parents in need of respite care. Ms. McLeod indicated that
Catholic Social Services has helped greatly with her baby and her
18-year-old. Catholic Social Services take the stress off of
families; the stress of caring for a disabled child is an
incredible burden. The statewide waiting list for Catholic Social
Services' respite care is approximately 216 families of which 40
are in Anchorage. Ms. McLeod noted that her daughter is one of the
40 from Anchorage on the waiting list. Quality respite care is
difficult to find because these children cannot be sat by a next
door teen-ager. Respite care allows parents to have time alone; it
keeps families together. Ms. McLeod wished that the legislators
could see the work that Catholic Social Services does. With the
savings from Harborview and the waiver refinancing, the quality
respite care could be continued without any additional cost.
Number 270
SENATOR ELLIS pointed out that the savings from the closure of
Harborview are not automatically applied to the waiting list and
services for the DD community. The legislature must specify in the
budget that those savings will be used for the DD community.
MS. MCLEOD echoed Representative Toohey's statement that change
takes time, but someone should come forward to make that change.
With this group of legislators, it can be done.
REPRESENTATIVE ROBINSON asked Ms. McLeod to discuss the waiting
list. MS. MCLEOD, speaking from her own experience, said that her
18-year-old has been on a waiting list for Independent Living with
minimal supervision since she was 16. After going to the
Department of Mental Health and Developmental Disabilities in order
to determine why the process was taking so long, Ms. McLeod had her
reassessed. Her 18-year-old was bumped up to a wait of 27 months
after the assessment. Ms. McLeod offered to provide the committee
with the actual number of people on each waiting list.
Number 309
EMILY ENNIS, Fairbanks Resource Agency (FRA), informed the
committee that FRA realized the need to employ persons with
developmental disabilities about 30 years ago. The organization
sought funds to provide support, funding from the Division of
Vocational Rehabilitation was obtained as well as the Division of
Mental Health and Developmental Disabilities. Vocational services
has proven that the employment of those with disabilities has a
positive outcome; it is welfare reform. Vocational services have
proven that individuals with disabilities can learn and hold
responsible jobs. Such services have helped these people obtain
good wages and eliminate the need for financial support in many
cases. Ms. Ennis emphasized that vocational services provide
dignity and status for these people. Vocational services are cost
effective, the state has saved thousands with such services. Ms.
Ennis pointed out that inadequate funding in communities has
prevented vocational services from achieving full potential.
Currently, 336 adults are on a waiting list for vocational
supports. This is the state's largest waiting list. Ms. Ennis
asked the committee to remember that 336 are waiting for jobs and
could be working with vocational supports. Savings from the
waivers and the closure of Harborview could provide the necessary
funds for vocational services. Ms. Ennis asked that these savings
be kept in DD community services and that work, not welfare, is
supported.
Number 370
JOHN MINANO from Fairbanks, informed the committee that he had been
with FRA for 10 or 11 years. He emphasized that those on the
waiting list should not wait any longer. All those on the waiting
list should have jobs to earn a little spending money to have some
fun. Mr. Minano wanted all those on the vocational services
waiting list to be helped and the children to be well and grow up.
He thanked the committee.
P.J. CARPENTER introduced her son, Josh, to the committee. Her son
has cerebral palsy and cannot walk. Ms. Carpenter was told to
institutionalize her son when he was one-day-old because there
would be less stress on her daughter. If Ms. Carpenter had not
been strong at that time, her son would be one of the 658 on the
waiting list. She informed the committee that her son had been on
a waiting list to modify the house by constructing a ramp into the
house. This ramp gave her son independence to enter and exit the
house as desired. The services her son has received from FRA,
Access Alaska and Hope Cottage have allowed Josh to live as normal
a life as possible. If she could, Ms. Carpenter said she would
invite all the legislators to her house. Ms. Carpenter informed
the committee that her son is also on a waiting list for
independent living because she has been informed that the process
could take anywhere from two to four years. The closure of
Harborview is estimated to save $150,000 per person per year.
Allowing that money to return to such services to modify homes
could help. Without the legislature's help, Josh will be another
statistic, another name on the waiting list.
Number 460
KRISTY POLLARD from Ketchikan, thanked the committee for their
support of the TEFRA option to Medicaid. The TEFRA option helps
with medical and travel expenses. Her daughter had six surgeries
in the first year and a half of her daughter's life. Ms. Pollard
informed the committee that her daughter incurred a quarter million
dollars in medical expenses. She and her husband were both
working, but taking so much time off for all the surgeries left her
fearful of losing her job as well as the medical insurance received
through that job. She discussed the tremendous stress involved
with having a disabled child. Ms. Pollard referred to the first
year and a half as the first house the couple could have purchased.
The TEFRA option sounded wonderful and a huge burden was lifted
when her daughter received the TEFRA option. A few months after
receiving the TEFRA option, she was able to quit her job and stay
home with her daughter who has only been sick once this year and
the medical expenses have decreased. Her daughter receives
services from the Infant Learning Program which has helped. Ms.
Pollard reiterated that the TEFRA option has saved her family.
Number 512
ROB KLEE, from Anchorage, introduced his daughter, Jordan. She has
Down's Syndrome. At first, the diagnosis of his daughter's
disability shattered many of the dreams for her. Eventually, Mr.
Klee realized that his daughter would reach most of her dreams,
even if those dreams took time. The hospital informed Mr. Klee
about the Infant Learning Program which has been a very successful
experience. Mr. Klee believed that his daughter is advancing much
quicker due to the Infant Learning Program. The Infant Learning
Program consists of a one hour visit with a therapist each week.
The program has taught Mr. Klee and his wife how to help Jordan
reach her dreams. Mr. Klee noted that he and his wife were able to
contribute payments on a sliding scale to the program because both
of their employers offer health insurance. He expressed concern
for the future and for others who are not as lucky as his daughter.
In conclusion, Mr. Klee urged the committee to accept the
Governor's recommendation to keep the Infant Learning Program
intact and increase the budget by $150,000.
TERRY LANDALL thanked the committee for last year's budget, but
increased funding is needed. There are 29 on the Infant Learning
Program waiting list in Wasilla alone. In the Valley, 54
developmentally disabled are on the waiting list and 254 in
Anchorage. Mr. Landall pointed out that teachers in these programs
are being paid less than those in public schools. These teachers
are working with their hearts. If a child is worked with at an
early age, the child will become a productive member of the
community. Without the teachers or the funding for the program, a
portion of the community is lost. Mr. Landall discussed the cost
effectiveness of keeping children at home versus institutions.
With extra funding, the teachers would not have to save items that
others throw away in order to teach the children. With extra
funding, motor skill toys could be purchased. Mr. Landall
emphasized that Alaska should be the first frontier in taking care
of the children in the community. He urged the committee's support
of all budget increases in all disabled programs.
JOHN STREET informed the committee that his three-year-old
daughter, Annie, was born with Fetal Alcohol Syndrome (FAS).
TAPE 96-18, SIDE B
Number 001
MR. STREET said the early intervention that his daughter received
will probably allow her to eventually live on her own. The Infant
Learning Program was the first program Mr. Street's daughter
utilized. Mr. Street emphasized the lack of education for normal
students regarding what really causes some of these disabilities.
FAS should not exist. Through 1974, doctors were saying that
drinking would not hurt an unborn child.
Number 564
MR. STREET discussed respite care. For the first 18 months, Mr.
Street's wife could not leave their daughter. When alcohol is
present in the womb, no bonding takes place. His daughter's liver
was born accustomed to living on the sugar in alcohol and therefore
was not performing properly. His daughter was not expected to
live. Respite care was necessary. Currently, his daughter will
not sleep alone and sleeps with he and his wife every night. Mr.
Street reiterated that no extra money is needed, just the money
that is already available. If this money needs to be designated
for this then lets do that. With early intervention, education and
more community homes, the costs will be decreased.
LOIS WELCH informed the committee that her daughter, Angie, was
born with Cerebral Palsy. Ms. Welch and her family lived in Texas
before moving to Alaska. Her daughter was at home until the age of
12 when she was placed in an institution which was six hours away.
Ms. Welch became depressed. During that time, her mother-in-law
invited her to Alaska. When she visited Alaska, she also visited
various agencies and programs. Ms. Welch returned to Texas ready
to move to Alaska. The family moved to Alaska hoping to move Angie
as soon as possible, only to discover that there was a waiting
list. She discussed her daughter's time in the institution where
she was confined to a wheelchair for about 10 hours a day. Her
daughter slept in a caged bed in an institution with 80 other
nonambulatory children. After much effort, Ms. Welch's daughter
was moved to Alaska. When her daughter arrived in Alaska she could
no longer stretch out her legs. Since her daughter has moved to
Alaska, she has grown by leaps and bounds. The services of Alaska
have given Ms. Welch hope for her daughter. However, there are 658
others who do not have hope. She noted that this was the first
time she had been face-to-face with legislators; she was pleased to
see they were attentive to the witnesses. On behalf of those
families that could utilize the services provided by the savings
from the closure of Harborview and the waiver refinancing, think of
giving them hope for the future.
CHAIRMAN GREEN thanked everyone for their testimony.
ADJOURNMENT
There being no further business before the committee, the meeting
was adjourned at 9:37 a.m.
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