Legislature(1995 - 1996)
02/10/1995 09:05 AM House HES
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* first hearing in first committee of referral
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= bill was previously heard/scheduled
JOINT HOUSE AND SENATE HEALTH, EDUCATION AND
SOCIAL SERVICES COMMITTEES
February 10, 1995
9:05 a.m.
HOUSE MEMBERS PRESENT
Representative Cynthia Toohey, Co-Chair
Representative Con Bunde, Co-Chair
Representative Norman Rokeberg
Representative Caren Robinson
HOUSE MEMBERS ABSENT
Representative Al Vezey
Representative Gary Davis
Representative Tom Brice
SENATE MEMBERS PRESENT
Senator Lyda Green, Chairman
Senator Loren Leman, Vice-Chairman
Senator Johnny Ellis
Senator Judy Salo
SENATE MEMBERS ABSENT
Senator Mike Miller
COMMITTEE CALENDAR
Presentation by the Council on Disabilities and Special Education.
WITNESS REGISTER
LESLIE YAMAMOTO, Member
Governor's Council on Disabilities
and Special Education
P.O. Box 83496
Fairbanks, Alaska 99708
POSITION STATEMENT: Explained the duties of the Governor's
Council.
KATHLEEN SOGA
Governor's Council on Disabilities
and Special Education
P.O. Box 20082
Juneau, Alaska 99802
POSITION STATEMENT: Explained her life before and after TEFRA.
JANELL MEADE
Governor's Council on Disabilities
and Special Education
1030 B Street
Juneau, Alaska 99801
POSITION STATEMENT: Discussed the Infant Learning Program.
NANCY DODGE, Member
Governor's Council on Disabilities
and Special Education
1751 Elcadore Drive
Anchorage, Alaska
POSITION STATEMENT: Addressed the increasing number of children
needing services.
SUSAN LOUDON, Member
Governor's Council on Disabilities
and Special Education
118 Kathryn Avenue
Juneau, Alaska 99801
POSITION STATEMENT: Discussion of the possible elimination of the
hold harmless clause in the permanent fund
legislation.
ERNIE DAMMANN, Member
Governor's Council on Disabilities
and Special Education
4744 Klondike
Anchorage, Alaska
POSITION STATEMENT: Explained the Strong Family Initiative.
KATHLEEN FITZGERALD, Member
Governor's Council on Disabilities
and Special Education
4521 Southpark Bluff Drive
Anchorage, Alaska
POSITION STATEMENT: Emphasized the need for the hold harmless
clause to remain for disabled persons.
ACTION NARRATIVE
TAPE 95-3, SIDE A
Number 002
CHAIRMAN GREEN called the Joint House and Senate Health, Education
and Social Services (HESS) Committee to order at 9:05 a.m. She
gave the floor to the Governor's Council on Disabilities and
Special Education.
LESLIE YAMAMOTO, a parent from Fairbanks on the Governor's Council,
explained that this council is a federally mandated planning
council for developmental disabilities. She noted that the council
serves as the Early Intervention and Special Education Advisory
Panel. The Governor's Council consists of 26 members of which 13
are consumers or secondary consumers, parents, and the other 13 are
providers of services. The council is required by federal and
state mandates to plan, evaluate, and promote services. The
council also reports to the legislature on the budget and the state
of the state's effect on developmentally disabled individuals.
MS. YAMAMOTO felt that discussions with families and providers
throughout the state had given the council a grasp on the issues
before them. Families desire help to keep their families in tact
and not to institutionalize their loved ones while using available
resources wisely. Ms. Yamamoto pointed out two areas in which
these resources could be used more prudently: continued
downsizing of Harborview and streamlining the Medicaid system.
MS. YAMAMOTO addressed the council's budget plan which attempts to
serve more people in more diverse means with less money. Directing
funding to community and family support programs would decrease the
need for a crisis driven system that is the current practice. She
noted that the population needing these services is increasing as
well as the waiting list. Although the $2.5 million request of the
council would increase the number of individuals served, there will
still remain many to serve. She extended appreciation to the
committee in passing waivers and options which have promoted family
preservation.
Number 112
KATHLEEN SOGA informed the committee that her 10 year old daughter,
Chelsea, has spina bifida. She noted that her family has
benefitted from the change in the state definition of developmental
disabilities and the TEFRA option. Before TEFRA, the family was
financially strapped due to expensive co-pays of their medical
insurance. She noted that even her state insurance did not cover
everything. After all the assistance programs said that she made
too much money to qualify, two options remained: quit working and
become a dependent of the state or give her daughter up to foster
care.
MS. SOGA pointed out that TEFRA was the first support program for
which she qualified. TEFRA affords the luxury of some free time
and most importantly, the ability to care for her daughter at home.
Ms. Soga stated that TEFRA has allowed her and her daughter to
remain an independent family. TEFRA provides financial medical
relief and personal care attendants. The personal care attendants
assist in meeting the needs of her daughter at crucial moments such
as mornings and afternoons when we need assistance. Ms. Soga
expressed appreciation for this program and implied the need for it
to continue.
SENATOR ELLIS inquired as to the length of time the waiver process
took for her. MS. SOGA stated that the process was rushed due to
her crisis situation; the process took three and a half weeks.
SENATOR ELLIS asked if that was typical of other waivers. He noted
complaints that the waiver processes was lengthy. KATHLEEN SOGA
said that the waiver process can take a long time.
Number 218
JANELL MEADE, a mother of three girls, recounted the first weeks of
her Heather's, her youngest daughter, life. Heather has a rare
genetic condition. After contacting the Infant Learning Program
(ILP), the family was provided with speech, physical and
occupational therapists trained to work with special needs infants
and their families. She noted the importance of her occupational
therapist coming every day.
MS. MEADE informed the committee that there are 20 Infant Learning
Programs in Alaska who served 2,600 families in Alaska last year,
however, a wait list of 461 families of developmentally delayed
infants and toddlers remains. Approximately 3,400 Alaskan infants
and toddlers require ILP services. She pointed out that half of
the children on the wait list for these services are located in the
Yukon-Kuskokwim Delta where 40 of 1,000 children experience fetal
alcohol syndrome, 60 times the national average. Alaska has the
second largest birth rate in the nation.
MS. MEADE stated that the legislature has cut the ILP's budget by
$400,000 over the last two years; Alaskan children are suffering.
She emphasized that the early years are critical in a child's
development. For many children, early intervention can eliminate
or greatly reduce the need for costly long-term services. The
council suggests a $3,368,500 increase in order to meet the needs
for Alaskan infants and toddlers and their families. She was
appreciative that her daughter, Heather, was born during a time in
which life in a community based setting, not an institution, was
viewed as more satisfactory to the consumer with less cost to the
state. She expressed the desire to have the same hopes and dreams
for all her daughters no matter if they are developmentally
disabled.
Number 300
NANCY DODGE, Chair of the Education Committee of the Governor's
Council and Special Education Service Agency (SESA) Board member,
informed the committee that SESA has passed an audit. She
suggested that SESA become an agency and the sunset period be
lifted. She explained that the numbers of children needing
services are increasing due to the influx of dysfunctional
families. There is a high frequency of alcohol, drug, physical and
sexual abuse. She noted that statistics show that 40 percent of
the children in the Yukon-Kuskokwim area have been exposed to
alcohol during pregnancy.
Ms. Dodge said that part of the role of the Governor's Council is
to provide advice to different agencies as well as being an
advocate. The council has recently incorporated traumatic brain
injured children into their services, which increases the number of
special education children. Accidents, alcohol abuse, modern
technology and emotional disturbances have increased the number of
special needs children. She reiterated the council's request for
additional funding. Most children receiving early intervention
will leave the system, especially those children with emotional
disturbances who would normally go through the mental health or
corrections system. She urged the committee to review the special
needs children when reviewing welfare reform.
Number 376
SENATOR SALO asked if there was any discussion about serving adults
with similar needs as the low incident children that SESA serves,
especially when both the adult and the child are in the same area.
MS. DODGE said that combining services does occur. For example, a
vision specialist coming into a village trains anyone in the area
interested. SESA focuses on in-depth training of people, family
preservation, and keeping service in the community which would
allow adults to receive help. However, an individual over the age
of twenty-two seeking a specific service would fall under a
different organization.
CHAIRMAN GREEN inquired as to the number of individuals ILP serves.
JANELL MEADE said that approximately 2,600 people are being served.
NANCY DODGE clarified that these children are being served for a
variety of needs other than fetal alcohol affected children.
REPRESENTATIVE TOOHEY asked what the percentage of fetal alcohol
affected children are in the group of children receiving services
from ILP. NANCY DODGE did not believe that such alcohol affected
children were the majority.
CHAIRMAN GREEN expressed interest in the number of hours that ILP
requires. NANCY DODGE explained that ILP is a very individualized
program. Ms. Dodge said that in Bethel, a specialist usually goes
out on a monthly basis. Ms. Dodge concurred with Chairman Green
that individuals may only need an hour a month. ILP also trains
the extended family.
REPRESENTATIVE CON BUNDE stated that he understood that early
intervention for an autistic child may require up to 40 hours a
week in order to achieve proposed goals. NANCY DODGE specified
that intensive programs mentioned by Kathy Fitzgerald at a previous
meeting are not currently offered in ILP in Alaska. Those one on
one models of intensive programs are very effective.
REPRESENTATIVE ROBINSON cited a case in Juneau in which a mildly
autistic child with attention deficit disorder remains in the main
classroom. The child is experiencing abuse by the other children.
What could be done to assist the teachers and students of this
classroom? NANCY DODGE explained that SESA does training
throughout the extended family and the community. Such training
should be available through other specialists as well, interagency
overlap should occur for the child.
REPRESENTATIVE ROBINSON asked where a parent in Juneau should go to
receive assistance. NANCY DODGE said that the parent should be
approached by someone; if no one approaches the parent, then the
school district should be contacted. There are agencies such as
Advocates Service for children who have been diagnosed by the
school as a special needs student and are not receiving the proper
service.
REPRESENTATIVE ROBINSON inquired as to where a parent could find
materials for a child who is not severely autistic. NANCY DODGE
informed Representative Robinson that there is an Autism Society in
Anchorage and Juneau as well as a program at UCLA. Dave Thomas is
the Director of Special Education in Juneau. KATHLEEN SOGA
indicated that each school should have a counselor with the ability
to give sensitivity training in the classroom.
Number 474
SUSAN LOUDON, mother of three children, related the story of her 18
year old who becomes paralyzed every eight to ten days for up to
five days at a time. ILP helped with her daughter and the family
until the age of three. At age twelve her daughter was enrolled in
public school where she received speech therapy, physical therapy
and occupational therapy. She noted that her daughter now does all
the things they were once told she would be unable to do. At age
fourteen, her daughter was diagnosed with epilepsy, mild cerebral
palsy as well as the paralyzing disability.
MS. LOUDON expressed gratitude that her daughter had received
highly individualized services because everyone is unique. She
stated that when her daughter was twelve, the family admired her
abilities and desires not her disabilities. After her daughter
expressed interest in child care, her daughter worked in child care
and is now an aide in the public school. The individual help that
her daughter, Christa, has received gives her a different lifestyle
experience than most. Ms. Loudon specified that her daughter
benefits from SSI, Medicaid and Public Assistance. Her daughter
wants to be a part of the community earning her own way.
MS. LOUDON called the committee's attention to the pending
legislation which would eliminate the hold harmless provision of
the Permanent Fund Dividend. She voiced support for able-bodied
individuals to work, while recognizing that disabled individuals
are not able-bodied and need support. She explained that in her
community they try to utilize parents as resources in order to meet
the needs of the community's disabled individuals. She noted that
there is a behavior management system, MANDT, which is not taught
to parents, only professionals. In order for a parent to receive
MANDT training, the parent must go through an agency who trains
their professionals in this technique. This could help many
families in Alaska. Ms. Loudon addressed the co-pays of Medicaid;
disabled individuals cannot deal with the Medicaid co-pays. That
can lead to individuals not taking their medication and ending up
on the streets which would eventually increase costs to the state.
REPRESENTATIVE ROBINSON clarified that Ms. Loudon seemed to imply
that eliminating the hold harmless provision would negatively
effect a large group of disabled individuals because these disabled
individuals would fall under the able-bodied individuals who should
be working. MS. LOUDON felt that eliminating the hold harmless
provision was a good idea for able-bodied persons, but there should
be an allowance in the legislation. In the long run, a blanket
elimination will cost more.
SENATOR ELLIS directed Ms. Loudon to Senator Frank who knows
everything about the Medicaid legislation.
TAPE 94-3, SIDE B
Number 571
ERNIE DUMMANN, Chairman of the Individual and Family Support
Committee on the Governor's Council on Disabilities and Special
Education, addressed the growing number of developmentally disabled
individuals on the wait list. Currently, there are more than 500
such individuals on the wait list for services. Since the
legislature has not appropriated funding for the new demand of the
wait list, the numbers on the wait list continue to increase. The
council is reviewing a new policy, the Strong Family Initiatives.
The council's budget document requests additional funds to cover
the Strong Family Initiatives which would serve those on the wait
list before they are in a crisis situation.
MR. DUMMANN told a story of a family with two boys, the youngest of
which became developmentally disabled at age seven. The boy began
to regress and lose the ability to walk and talk as well as having
screaming fits. The family went to the provider community and
asked for assistance, but there were no services available because
there were no funds. The family continued to try to deal with
their situation for about three more years. Finally, the stress
was too much and the family was forced to give up their child in
order that he could receive services and the rest of the family
could be saved. Mr. Dummann expressed shame to inform the
committee that this was his family's story. Mr. Dummann said that
families with disabled children want to keep their family in tact
and not have to give up their disabled child.
MR. DUMMANN pointed out that the legislature shares in his shame
because the legislature represents all the families of Alaska. He
emphasized the need for services for developmentally disabled
individuals and the number of families have increased and must be
dealt with. The problem will not go away and without funding the
problem will worsen. He urged the committee to act immediately
before hundreds of families are caused to fail due to legislative
inaction.
CHAIRMAN GREEN asked Mr. Dummann to describe the Strong Family.
ERNIE DUMMANN explained that in Alaska the delivery system for
developmentally disabled services have always been crisis driven.
The lower and middle part of the wait list never get served and
will not until they reach a crisis state. The Strong Family
Initiatives would attempt to serve 225 individuals on the
developmentally disabled wait list with a broad scope of care.
MR. DUMMANN stated that this initiative would require $2.5 million
in funding. This initiative would not address the most severe
needs such as foster care. He pointed out that even with funding,
the wait list will contain over 300 persons. There must be an
ongoing commitment to the community and families by the
legislature.
Number 475
KATHY FITZGERALD, parent of a severely disabled child, told the
story of her disabled friend, Gracie. Gracie's parents are dead
and she has no one; that is a fear that Ms. Fitzgerald indicated
she had about her daughter. When there were Medicaid cuts Gracie
could not receive dental or vision care.
MS FITZGERALD recognized the need to review Medicaid; individuals
able to be productive should be working. She emphasized the need
during reform to continue the hold harmless clause for those who
cannot take care of themselves. Currently, community based
services are doing much for this situation. Ms. Fitzgerald
indicated her hope that cuts do not lead to placing disabled
persons in institutions. Institutions are very cost ineffective
and morally devastating.
SENATOR SALO asked if the majority of Alaskans share the view that
the government should care for persons least able to care for
themselves. KATHY FITZGERALD felt that Alaskans did share this
view, but many do not seem to understand that most people receiving
welfare are like Gracie.
REPRESENTATIVE ROBINSON expressed the need to communicate the
problems revealed by the council regarding the hold harmless
clause. There are difficulties in determining who is the most
needy today and who is tomorrow.
KATHY FITZGERALD specified that prevention is the key to all
situations, whether assistance is needed due to socio-economic
reasons or disabilities.
CHAIRMAN GREEN thanked everyone for their information.
There being no further business before the committee, the meeting
adjourned at 10:10 a.m.
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