01/31/2006 03:00 PM House HEALTH, EDUCATION & SOCIAL SERVICES
| Audio | Topic |
|---|---|
| Start | |
| HB357 | |
| HB312 | |
| Adjourn |
+ teleconferenced
= bill was previously heard/scheduled
| += | HB 357 | TELECONFERENCED | |
| *+ | HB 312 | TELECONFERENCED | |
| + | TELECONFERENCED |
ALASKA STATE LEGISLATURE
HOUSE HEALTH, EDUCATION AND SOCIAL SERVICES STANDING COMMITTEE
January 31, 2006
3:06 p.m.
MEMBERS PRESENT
Representative Peggy Wilson, Chair
Representative Paul Seaton, Vice Chair
Representative Vic Kohring
Representative Sharon Cissna
Representative Berta Gardner
MEMBERS ABSENT
Representative Tom Anderson
Representative Carl Gatto
COMMITTEE CALENDAR
HOUSE BILL NO. 357
"An Act updating the terminology in statutes for persons with
disabilities; and providing for an effective date."
- MOVED CSHB 357(HES) OUT OF COMMITTEE
HOUSE BILL NO. 312
"An Act relating to pregnant women; requiring hospitals,
schools, and alcohol licensees and permittees to distribute
information about fetal alcohol effects and fetal alcohol
syndrome; relating to the consumption of alcoholic beverages by
and the sale or service of alcoholic beverages to a pregnant
woman; requiring involuntary commitment of a pregnant woman who
has consumed alcohol; creating a fund for the prevention and
treatment of fetal alcohol syndrome and fetal alcohol effects;
relating to fines and to the taking of permanent fund dividends
for selling or serving alcoholic beverages to pregnant women;
and increasing taxes on sales of alcoholic beverages to fund
treatment and education related to fetal alcohol syndrome and
fetal alcohol effects."
- HEARD AND HELD
PREVIOUS COMMITTEE ACTION
BILL: HB 357
SHORT TITLE: STATUTORY REFERENCES TO DISABILITIES
SPONSOR(s): REPRESENTATIVE(s) WILSON
01/11/06 (H) READ THE FIRST TIME - REFERRALS
01/11/06 (H) HES, FIN
01/24/06 (H) HES AT 3:00 PM CAPITOL 106
01/24/06 (H) Heard & Held
01/24/06 (H) MINUTE(HES)
01/31/06 (H) HES AT 3:00 PM CAPITOL 106
BILL: HB 312
SHORT TITLE: FETAL ALCOHOL SYNDROME/EFFECTS PREVENTION
SPONSOR(s): REPRESENTATIVE(s) WEYHRAUCH
01/09/06 (H) PREFILE RELEASED 12/30/05
01/09/06 (H) READ THE FIRST TIME - REFERRALS
01/09/06 (H) HES, JUD, FIN
01/31/06 (H) HES AT 3:00 PM CAPITOL 106
WITNESS REGISTER
AARON DANIELSON, Intern
for Representative Wilson
Alaska State Legislature
Juneau, Alaska
POSITION STATEMENT: Presented HB 357 and CSHB 357, Version G,
on behalf of Representative Wilson, sponsor.
BILL HOGAN, Deputy Commissioner
Office of the Commissioner
Department of Health and Social Services (DHSS)
Juneau, Alaska
POSITION STATEMENT: During hearing on HB 357, answered
questions and offered information on HB 312.
JACQUELINE TUPOU, Staff
to Representative Bruce Weyhrauch
Alaska State Legislature
Juneau, Alaska
POSITION STATEMENT: Presented HB 312 on behalf of
Representative Weyhrauch, sponsor.
REPRESENTATIVE BRUCE WEYHRAUCH
Alaska State Legislature
Juneau, Alaska
POSITION STATEMENT: Testified as prime sponsor of HB 312.
MARGARET VOLZ, Pediatric Nurse Practitioner
The Children's Place;
Volunteer Medical Provider
Fetal Alcohol Spectrum Disorders (FASD)
Matsu Diagnostic Team
Wasilla, Alaska
POSITION STATEMENT: Testified on HB 312.
STEPHANIE BIRCH, Section Chief
Women & Children, Family Health
Division of Public Health (DPH)
Department of Health & Social Services (DHSS)
POSITION STATEMENT: Testified on HB 312.
LAURA ROREM, Parent Navigator
Fetal Alcohol Spectrum Disorders (FASD)
Juneau Diagnostic Team
Juneau, Alaska
POSITION STATEMENT: Testified in support of HB 312.
LARRY ROREM, Pastor
Shepard of the Valley Lutheran Church
Juneau, Alaska
POSITION STATEMENT: Testified in support of HB 312.
DR. TOM NIGHSWONDER, Medical Director
Fetal Alcohol Spectrum Disorders (AFASD) - Alaska Program
Juneau, Alaska
POSITION STATEMENT: Testified on HB 312.
DALE FOX, Executive Director
Cabaret Hotel Restaurant & Retailer's Association (CHARR)
Anchorage, Alaska
POSITION STATEMENT: Stated concerns for HB 312 and testified in
support of the Committee Substitute (CS), Version Y.
CONNIE MORGAN, Program Coordinator
Covenant House Alaska Crisis Center
Anchorage, Alaska
POSITION STATEMENT: Her testimony on HB 312 was read by
Patricia Senner.
PATRICIA SENNER, Nurse Practitioner
Covenant House Alaska Crisis Center
Anchorage, Alaska
POSITION STATEMENT: Answered questions on behalf of Connie
Morgan's testimony on HB 312.
HEATHER AMY SCOTT
Anchorage, Alaska
POSITION STATEMENT: Her testimony on HB 312 was read by Cheryl
Scott.
CHERYL SCOTT, Parent Navigator
Training Coordinator
Stone Soup Group
Anchorage, Alaska
POSITION STATEMENT: Testified on HB 312.
MICHAEL BALDWIN, Mental Health Clinician;
Fetal Alcohol Spectrum Disorders (FASD)
MatSu Diagnostic
Anchorage, Alaska
POSITION STATEMENT: Testified on HB 312.
DIANE CASTO, Section Manager
Prevention and Early Intervention Section
Division of Behavioral Health (DBH)
Department of Health and Social Services (DHSS)
Juneau, Alaska
POSITION STATEMENT: Testified on HB 312.
ACTION NARRATIVE
CHAIR PEGGY WILSON called the House Health, Education and Social
Services Standing Committee meeting to order at 3:06:26 PM.
Representatives Wilson, Seaton, Kohring, Gardner, and Cissna
were present at the call to order.
HB 357-STATUTORY REFERENCES TO DISABILITIES
3:06:38 PM
CHAIR WILSON announced that the first order of business would be
HOUSE BILL NO. 357, "An Act updating the terminology in statutes
for persons with disabilities; and providing for an effective
date."
AARON DANIELSON, Intern for Representative Wilson, Alaska State
Legislature, reminded the committee that Representative Wilson
introduced HB 357 on behalf of the disabled community and the
Department of Labor & Workforce Development (DLWD). The
legislation modifies several existing statutes by replacing the
term "handicapped" with "person with a disability." In lieu of
the amendment discussed at the last hearing on HB 357, the
sponsor has provided a committee substitute (CS), he pointed
out.
3:09:16 PM
REPRESENTATIVE GARDNER moved to adopt CSHB 357, Version 24-
LS1407\G, Bannister, 1/30/06, as the working document. There
being no objection, Version G was before the committee.
CHAIR WILSON explained that Version G encompasses the changes
discussed last week. On page 2, line 3, the language "students
who are deaf" was inserted. On page 13, lines 6-7, the language
"persons with developmental disabilities, persons who are"
replaces the language "the developmentally disabled, the". On
page 3, lines 9-10, the language "persons with mental illness,
persons with physical disabilities" replaces the language "the
mentally ill, the physically handicapped". On page 2, line 11,
the language "persons with substance abuse disorders" replaces
the language "alcoholic and drug addicts". On page 17, line 27,
of HB 357 the language "disabled" was replaced with "impaired".
REPRESENTATIVE SEATON turned attention to page 2, lines 5-6, and
asked if the language "health-impaired in other ways" is a
catchall. He expressed the need to be sure that there is no
designation that could mean that someone who is merely ill could
be categorized as health-impaired. He asked if the
aforementioned language on page 2, lines 5-6, would qualify ill
individuals for special education services meant for persons
with disabilities.
CHAIR WILSON opined that although the wordage was changed, the
meaning was not.
3:15:40 PM
BILL HOGAN, Deputy Commissioner, Office of the Commissioner,
Department of Health and Social Services (DHSS), explained that
usually a medical condition doesn't qualify an individual for
special education services. Typically, the medical condition as
well as a functional impairment qualifies an individual for
special education services. In response to Representative
Seaton, Mr. Hogan said that's how he would read this language.
REPRESENTATIVE SEATON moved to report CSHB 357, Version 24-
LS1407\G, Bannister, 1/30/06, out of committee with individual
recommendations and the accompanying fiscal notes. There being
no objection, CSHB 357(HES) was reported from the House Health,
Education and Social Services Standing Committee.
HB 312-FETAL ALCOHOL SYNDROME/EFFECTS PREVENTION
CHAIR WILSON announced that the final order of business would be
HOUSE BILL NO. 312, "An Act relating to pregnant women;
requiring hospitals, schools, and alcohol licensees and
permittees to distribute information about fetal alcohol effects
and fetal alcohol syndrome; relating to the consumption of
alcoholic beverages by and the sale or service of alcoholic
beverages to a pregnant woman; requiring involuntary commitment
of a pregnant woman who has consumed alcohol; creating a fund
for the prevention and treatment of fetal alcohol syndrome and
fetal alcohol effects; relating to fines and to the taking of
permanent fund dividends for selling or serving alcoholic
beverages to pregnant women; and increasing taxes on sales of
alcoholic beverages to fund treatment and education related to
fetal alcohol syndrome and fetal alcohol effects."
3:17:13 PM
JACQUELINE TUPOU, Staff to Representative Bruce Weyhrauch,
Alaska State Legislature, presented HB 312 on behalf of
Representative Weyhrauch, sponsor, paraphrasing from the
following written statement [original punctuation provided]:
Fetal Alcohol Spectrum Disorders [FASD] are a scourge
to our society and 100% preventable. FASDs are the
most common cause of mental retardation in Alaska's
children, causing permanent birth defects, retarding
brain function, arrested emotional and physical
development, causing poor behavior, deformed facial
features, and harming learning and sleeping patterns.
It is deplorable that Alaska ranks first in the United
States for the highest number of children born with
FASD.
Each child born in Alaska with FASD costs millions of
dollars over the life of that child. A 2005 study
conducted by the McDowell Group estimates the total
lifetime costs for providing services to an individual
with FAS are estimated at $3.1 million. This drain on
limited funds covers special education services or
assistance for health services, and juvenile and adult
justice costs. Eliminating FASD in children born in
Alaska is in the best interests of the public.
House Bill 312 requires a newborn to be screened for
alcohol exposure. This is an important piece of
information that can lead to an early diagnosis. Early
diagnosis reduces the risk of problems in life
associated with FASD, including troubles at school,
with substance abuse and with the law.
Additionally, this legislation also mandates an
aggressive public education campaign. It requires
hospitals and schools to distribute information on
preventing FASD, and tasks the State Department of
Education with developing the materials and sponsoring
a public education campaign on FASD.
Fetal Alcohol Spectrum Disorders are a problem of
massive proportion to our state. FASD affects those
who suffer from it, their families and love ones,
communities and our state as a whole physically,
emotionally, and financially. I offer House Bill 312
as a step towards the goal of eradicating this plague
that causes such sorrow and aguish for our Alaskan
children.
3:19:54 PM
REPRESENTATIVE BRUCE WEYHRAUCH, Alaska State Legislature,
testifying as sponsor of HB 312, provided a history of the bill
and the provisions previously considered in its purview.
Although it was not entirely supported by the legislature, as
originally presented, the bill has been redrafted to a more
workable scope focusing on public education, early screening for
FASD, and the appropriate disclosure of a child's prenatal
records, he said.
3:22:10 PM
REPRESENTATIVE WEYHRAUCH stated that evidence indicates the
importance of providing adoptive parents with applicable
information of the child's exposure to alcohol in the womb.
Also, early screening and diagnostic measures are being focused
on across the nation, and similar programs should be implemented
in Alaska. He maintained that providing parents an opportunity
for early detection, treatment, and support of FASD children is
paramount.
REPRESENTATIVE CISSNA inquired as to the possibility of
incorporating additional funding with the educational fiscal
note to encompass treatment programs for at risk women. Also,
she suggested that FASD diagnosis at birth is difficult and not
necessarily conclusive and thus perhaps not the best time to
conduct this test.
REPRESENTATIVE WEYHRAUCH responded that if the state would like
to incorporate additional funding to include alcohol treatment
programs for mothers, the scope of the bill could be broadened.
Currently, the bill is drafted to focus on FASD.
3:26:09 PM
REPRESENTATIVE CISSNA underscored the need to provide programs
for expectant alcoholic mothers. She related her understanding
that some expectant women who try to enter state alcohol
treatment programs are denied access due to space availability.
Therefore, she suggested that pregnant women be offered a
priority status.
3:26:56 PM
REPRESENTATIVE GARDNER reiterated Representative Cissna's
concerns regarding the viability of obtaining conclusive test
results on newborns who do not present physical symptoms of
FASD.
MS. TUPOU directed the committee's attention to the form in the
committee packet titled "Alcohol Exposure Screening Test:
Newborns," introducing it as an example of what could be used to
diagnose an infant or to provide benchmark data for future
diagnosis. Meconium testing will also give the doctors an
indication of FASD, although it's not an absolute diagnosis.
This benchmark information would be helpful throughout the life
of the child, who may otherwise be misdiagnosed and not receive
appropriate support for his/her condition.
3:30:04 PM
CHAIR WILSON pointed out that meconium testing does not indicate
the level of drinking that has occurred, nor are the mothers
always forthcoming in interviews about their alcohol usage
during pregnancy. She commented that, without a means to
accurately diagnose, some of the FASD symptoms are not evident
until the child attends school where behavioral, social, and
learning issues manifest. The bill analysis indicates that the
percentage of children diagnosed at birth is minimal compared to
diagnosis at a later age, and in reviewing the three-page sample
screening form provided, she opined that it would be difficult
to answer the questions accurately for a newborn.
3:32:34 PM
REPRESENTATIVE SEATON asked for clarification as to how the
language on page 1 line 8, and page 2, line 14, regarding
testing of the newborn, relates to the screening form test
questions.
MS. TUPOU explained that the screening form provides data that
may assist in later analysis. She pointed out that diagnosis of
FASD is not an accurate science, but an evolving technology.
The bill contains permissive language to allow for the best and
most appropriate medical mechanisms to be implemented for FASD
detection.
3:34:48 PM
REPRESENTATIVE SEATON expressed concern that page 2, line 13,
requires that whomever attends "a newborn child shall cause the
child to be tested," which is followed by the consequence on
page 2, line 25, that the attendant "who violates this section
is guilty of a misdemeanor ... punishable by a fine of ...
$500." With the possibility of becoming a felon, he stressed
the need to clarify exactly what the attendant to a birth will
be instituting.
3:35:41 PM
MS. TUPOU called the committee's attention to the language on
page 2, line 17, which read: "The department shall adopt
regulations regarding the method used and the time or times of
testing as accepted medical practice indicates". The
aforementioned language allows the department to determine and
adopt into regulation appropriate screening or testing measures.
CHAIR WILSON underscored that there is not a diagnostic test, at
this time, which can entirely determine the various aspects of
FASD.
3:37:30 PM
MARGARET VOLZ, Pediatric Nurse Practitioner, The Children's
Place; Volunteer Medical Provider, Fetal Alcohol Spectrum
Disorders (FASD), MatSu Diagnostic Team, emphasized that there
is not a newborn screening test for FASD, thus it is important
to have prenatal exposure information available for determining
risk assessments on children beginning at three years of age.
With that in mind, she recommended that the bill include
language to ensure that medical providers document this vital,
prenatal information, stressing that for children to receive
services they must have a diagnosis, and this critical prenatal
information is often not contained in their files.
CHAIR WILSON reminded Ms. Volz that standard questions are asked
routinely during prenatal visits, and suggested that the
pertinent information is perhaps available but isn't being
disseminated.
3:40:04 PM
MS. VOLZ pointed out that in the newborn record, prenatal
information may be available, and if it indicates a history of
alcohol use, availability of that documentation is important for
the future diagnosis of FASD. In answer to a question, she
agreed that FASD cannot accurately be tested for at birth, but
that the discovery of prenatal exposure via screening methods
would be accurate.
3:41:47 PM
STEPHANIE BIRCH, Section Chief, Women & Children, Family Health,
Division of Public Health (DPH), Department of Health & Social
Services (DHSS), echoed Ms. Volz's testimony regarding the
inability to reliably test a newborn for determining when
alcohol consumption occurred, or the quantities ingested, which
is of vital importance to determine the possibility of FASD.
She explained that the reason for the two fiscal notes attached
from DPH is to support the collection of this critical data and
for its analysis to determine the effectiveness of programs
initiated for the prevention of FASD. In response to a
question, she agreed that regular prenatal visits do provide for
standard questioning. However, drawing from her experience, she
related that women who are heavy users of alcohol typically do
not avail themselves of early prenatal care and tend to come for
medical care when they are in labor. Analyzing why these women
drink would be the core issue, and she echoed Representative
Cissna's thrust for addressing the situation from a proactive
preventative program approach.
3:46:25 PM
CHAIR WILSON pointed out that often women who are heavy drinkers
do not eat well and thus deplete their systems. Furthermore,
they may not even realize that they are pregnant.
3:46:52 PM
REPRESENTATIVE SEATON asked Ms. Birch to provide her opinion on
the language of the bill that requires FASD screening to be
performed by the attendant of the birth.
MS. BIRCH opined that if the FASD screening required is a
biochemical method utilizing urine/blood/meconium measures, she
would not consider it to be particularly helpful. A history
taking at the time of delivery is helpful, but would not need to
be mandated, as it is already the standard of care. She offered
that in order to test a child accurately for FASD, four or five
providers often require multiple appointments, and explained
that newborns do not have a mature enough neural system to
display detectable indicators for an accurate diagnosis.
3:49:52 PM
CHAIR WILSON paraphrased from the Bill Analysis, 1/31/06, page
2, paragraph 2 and page 3, paragraph 1, which read respectively:
Unless a newborn has been severely impacted by
maternal alcohol consumption, few signs of disability
will be visible at birth. Age three is about the
earliest a full diagnosis can occur ... ."; "The
average age of diagnosis at this time is ten years of
age and we would like to see children being diagnosed
earlier (by age six is recommended) ....
CHAIR WILSON asked for an opinion on the bill language that
refers to the testing of infants.
MS. BIRCH opined that the bill would be improved by removing the
requirement for infant testing.
3:51:00 PM
LAURA ROREM, Parent Navigator, Fetal Alcohol Spectrum Disorders
(FASD), Juneau Diagnostic Team, stated support of HB 312 as a
safety net for adoptive parents. Explaining that she is the
mother of two FASD adult children who were presented to her and
her husband as healthy newborns, she described the difficulty of
rearing them without the benefit of an accurate diagnosis until
they were young adults. She maintained that early detection
would have been extremely helpful as parents and for the school
district; however, the difficulties of parenting adult FASD
children continue. She related her efforts to protect her
unborn grandson when her FASD, alcoholic daughter became
pregnant. She related that her daughter repeatedly denied her
alcohol use, when the prenatal doctor made the standard
inquiries. In conclusion, Ms. Rorem advocated for early
intervention, diagnosis, and disclosure.
3:58:16 PM
LARRY ROREM, Pastor, Shepard of the Valley Lutheran Church,
stressed that inappropriate services create costs to society, as
families work to cope with, and suffer through, the reality and
intensities of raising FASD children, and supporting them as
adults.
3:59:23 PM
REPRESENTATIVE CISSNA asked Mr. & Ms. Rorem whether they thought
that their daughter would have entered an available treatment
program.
MS. ROREM opined that she would not have utilized a program.
MR. ROREM interjected that their daughter considers herself to
be self-sufficient and does not willingly seek help from anyone.
4:01:38 PM
REPRESENTATIVE GARDNER pointed out that part of the thrust of
this bill is to identify individuals who will utilize available
services. She inquired as to what services Mr. & Ms. Rorem
would deem helpful and useful.
4:02:35 PM
MS. ROREM said that, provided an early diagnosis, her children
might have qualified for special education, and benefited from a
level of understanding from the school district to help them
finish their schooling. She explained that today it is an on-
going effort to keep them out of jail.
MR. ROREM echoed the need for public education to help society
understand and learn to accommodate the FASD afflicted
individuals while supporting the parents.
4:04:45 PM
REPRESENTATIVE GARDNER highlighted that in the end they are
individuals who have permanent brain damage.
MS. ROREM opined that they still don't belong in jail or deserve
the treatment they receive in society today. She expressed
concern for the future of her children as adults.
DR. TOM NIGHSWONDER, Medical Director, Fetal Alcohol Spectrum
Disorders (FASD) - Alaska Program, explained that the FASD
diagnosis was not established until 1972 and at that time the
disorder was first described based primarily on facial features,
which only about 10 percent of FASD sufferers actually display.
Since that time the full scope of the condition has been studied
and better understood as a syndrome which encompasses a range of
symptoms that are "underneath the water ... called alcohol-
related birth defects." He said that one of the most difficult
FASD characteristics to deal with is the inability of the
afflicted to learn from experience, as evidenced through the
manifestation of a myriad of disruptive behaviors and
inappropriate actions. He stressed that early diagnosis is very
important to minimize the presentation of what are termed
"secondary disabilities." However, he pointed out, that the
earliest possible age for an accurate test is about age three.
He counseled that the birth screening and tests described in the
bill would prove costly and be of little value, but maintained
that an accurate, prenatal history is critical albeit hard to
obtain. Further, he stated that Alaska's typical FASD child
will be in foster care until age 18 and then graduate directly
into the juvenile justice system, and he opined that state jails
are possibly housing an excessive number of undiagnosed FASD
adults.
4:12:41 PM
DR. NIGHSWONDER, emphasizing the tragedy and costly life-long
endeavor that an FASD birth represents, said "Anything we can do
to beef up the prevention and keep pushing it is very useful."
The Alaska Native Tribal Health Consortium (ANTHC) and
Southcentral Foundation operate Dena A Coy, a successful
residential program for alcoholic mothers. He emphasized that
this is small facility is the only one of its kind, has 20 beds,
and only serves Alaskan Natives. He mentioned that Senator Fred
Dyson has suggested a registry of all pregnant women who are
drinking. In response to a question, he confirmed that Dena A
Coy houses pregnant mothers with their other children, and
reiterated that it is the only residential program in the state.
He said that although there are other alcohol treatment programs
in the state that serve a broader spectrum of needs, additional
resources targeted for expectant, alcoholic mothers are
necessary. He acknowledged that public education about FASD has
been expanded, but questioned whether it's reaching the right
audience.
4:17:23 PM
DALE FOX, Executive Director, Cabaret Hotel Restaurant &
Retailer's Association (CHARR), stated that the concerns
originally held by the hospitality industry for HB 312 have been
addressed in the committee substitute (CS). He reported that
his organization supports: funding extensive education,
continuation of the programs for public service announcements
(PSA's), and a program analysis to establish whether the target
market is being reached. He said that the lack of treatment
programs for pregnant women, or treatment that comes too late,
are the critical areas. He then emphasized the need for funds
to assist people in getting clean and sober. He stated:
Alcohol in this state is taxed at five to six times
the national average. We don't have programs that are
five to six times the national average that we ought
to have. ... There's plenty of tax money going into
the till to ... do the education, to do the treatment,
that's the will of the legislature to spend it ...
appropriately to prevent this terrible problem that we
think needs your attention.
4:20:53 PM
CONNIE MORGAN, Program Coordinator, Covenant House Alaska Crisis
Center, testimony was read by Patricia Senner [original
punctuation, spelling, and grammar provided]:
My name is Connie Morgan and I am the Program
Coordinator for Covenant House Alaska's Crisis Center.
Covenant House Alaska serves over 2,500 homeless and
at risk teenagers a year, and the Crisis Center houses
over 600 youth a year.
In recent years we have become aware that as many as
60% of the youth we serve at the Crisis Center are
affected by FASD. The majority of these youth have
never received a formal diagnosis in spite of the fact
that many of them have had difficulties in school,
have been in foster care, or have been served by the
juvenile justice system. There is no one in Anchorage
who will diagnosis a teenager affected by FASD.
The youth we serve who are affected by FASD are our
most challenging youth to work with. We have found
that these individuals have the following service
needs:
Education - Most of these youth do not do well in
school and frequently drop out at a young age. Most
of these youth can read and do basic arithmetic and
can advance with individual instruction. It never
ceases to amaze us that many of these youth have not
had IQ [intelligence quotient] tests in spite of years
of struggling in the school system.
Employment - Many of these youth are able to find a
job, but are unable to maintain it due to difficulties
following instruction, difficulties multi-tasking, and
most of all, difficulties knowing how to get along
with employers and employees. Inability to problem
solve is one of the main weaknesses of youth affected
by FASD, and this translates into them having a short
fuse and inability to read social situations.
Housing - Since these youth have difficulties
maintaining employment they have difficulty paying for
housing. Many of them couch surf, living with a
friend who has an apartment or hotel room.
Keeping Appointments - One of the hallmarks of an
individual affected by FASD is there inability to keep
track of time. Keeping appointments that are
scheduled weeks or months in the future are next to
impossible. Because these youth can not keep
appointments they are frequently discharge or fired by
agencies and medical providers. It is ironic that the
youth most in need of these services are being denied
services because of their disability.
One adoptive mother stated that people with FASD need
life-long external brains. We couldn't agree more!
We serve youth up to age 21, but sadly after that
there are few services available other than the prison
system. These individuals should be viewed as having
a developmental disability, and needing the same types
of services as individuals who are mildly retarded.
Most of these youth do not qualify for DD
[developmental disabilities as defined under AS
47.80.900] services because their IQ falls in the
borderline range.
In closing, I want to emphasize that if we are to
properly serve youth and adults with FASD there needs
to be a set of services adapted to meet their needs.
There is a critical need for employment, housing and
case management services. Without these services
these individuals will continue to fail and many will
end up in jail. We are optimistic that with help,
there can be a productive future for individuals with
FASD.
4:27:03 PM
CHAIR WILSON asked what approach Covenant House could recommend
to identify and fund appropriate, meaningful programs for these
type of at-risk young adults.
PATRICIA SENNER, Nurse Practitioner, Covenant House Alaska
Crisis Center, reported that funding was received recently from
DHSS, enabling Covenant House to establish a supportive job
program for its FASD clients, although the benefit and analysis
of this program will not be available until 2007. However, she
said, "I don't think it's quite as hopeless as people may
think." Some of these youth have IQs ranging from 20 to 130,
and the higher functioning individuals can be quite successful
when provided a job coach.
REPRESENTATIVE GARDNER cited a study from the Pine Ridge Indian
Reservation, which reported how the fetal alcohol affected
populace had entered a cycle of multi-generational proportions.
The study indicated that fetal alcohol effected women tended to
have more children, at an early age, and bore children with
FASD.
4:30:33 PM
MS. SENNER reported that a large number of the FASD afflicted
young women do become pregnant, and said that Covenant House is
currently sheltering a young mother and her four children. It
is a problem that needs addressing, she said, pointing out that
fetal exposure to methamphetamines (meth) and cocaine is as
detrimental as alcohol. It has been reported that one in six
children have had prenatal exposure to cocaine, statistics which
could be extrapolated to include other drugs. In response to a
question, she said that residency at Covenant House is passive,
requiring the applicant to voluntarily commit to the program.
Additionally, she attributes the program's success to a
community that supports nonresidential clients as well.
4:33:37 PM
CHAIR WILSON asked how they identify an alcoholic mother and
determine who becomes a resident at Covenant House.
MS. SENNER replied that some mothers party more than drink on a
regular basis, and some have a stable and supportive home life
that can be incorporated into the program.
4:34:57 PM
HEATHER AMY SCOTT, had her testimony read by her mother, Cheryl
Scott, as follows:
I'm here as a sibling of a young adult who has FASD.
I want to see that this bill will help provide life-
long support for my brother such as medical, housing,
and job support. I would like to also request support
in education for young people with FASD so they don't
have babies that are affected like both parents of my
foster baby.
CHERYL SCOTT, Parent Navigator, Training Coordinator, Stone Soup
Group, stated that Ms. Heather Scott's son is a second
generation FASD, and he has an adopted uncle who is a third
generation FASD. She said that although FASD is not a genetic
disorder, simply stated it remains easy for young women to drink
during pregnancy. In response to a question, she opined that
the examples presented today represent unplanned pregnancies.
4:37:55 PM
MS. CHERYL SCOTT reported that she regularly receives requests
from parents for counsel regarding placement of an FASD child in
out-of-state residential programs. This is the outcome for many
families who are not able to receive in-state assistance. She
opined that if children were diagnosed at an earlier age and
could receive appropriate support, this demand could be
lessened. Also, despite the state-approved FASD training
courses that are offered for medical service providers, she
stressed that local obstetrics/gynecologists (OBGYNs) currently
tell expectant mothers that a glass of wine once a week is
allowable; a direct contradiction to the facts. She suggested
that perhaps the bill could mandate that prenatal information is
to be chronicled as part of the newborn's birth record. As a
voice for over 300 families in Alaska who are parenting FASD
children, she requested that legislation be created for life-
long support of these afflicted constituents.
4:44:09 PM
CHAIR WILSON highlighted that including the prenatal information
as part of the birth record is a measure that could be included
without fiscal impact.
4:45:41 PM
MICHAEL BALDWIN, Mental Health Clinician; Fetal Alcohol Spectrum
Disorders (FASD), MatSu Diagnostic Team, highlighted the need
for funding and infrastructure of treatment programs as a means
for prevention, and opined that applying funds for programs that
educate future mothers before "the damage is done," is an
investment in the future as it reduces the need to fund life-
long support facilities. In response to a question, he
concurred that the technology is not available to accurately
diagnose FASD prior to age three. In terms of multigenerational
FASD occurrences, he reported that two thirds of his caseload
would meet that profile.
4:51:05 PM
BILL HOGAN, Deputy Commissioner, Department of Health and Social
Services (DHSS), echoed that early diagnosis of FASD is
essential and said that the disorder has wide ranging impacts
that involve many sections and divisions of DHSS, as well as
other state departments. The department has developed screening
and diagnostic procedures currently being used by 14 diagnostic
teams across the state. He reported that many of the FASD
children who are being referred to Lower 48 centers have
multiple diagnoses. Additionally, he stated that DHSS supports:
increased public awareness of FASD, increased ability to screen
and diagnose the problem, and treatment options. He underscored
the need for ongoing surveillance to determine the effectiveness
of the various programs. He noted that substance abuse
treatment centers throughout the state do prioritize pregnant
women, although there is limited space available in the
programs.
4:54:09 PM
DIANE CASTO, Section Manager, Prevention and Early Intervention
Section, Division of Behavioral Health (DBH), Department of
Health and Social Services (DHSS), stated support for HB 312 and
reported that Alaska has some of the best surveillance data
available because of the birth defects registry, which mandates
reporting and follow-up work with a diagnostic team. Responding
to Chair Wilson, she said that statistics alone indicate that
Alaska has a high rate of alcoholism, and the state licensed
medical providers do a good job of tracking and reporting birth
defects. She repeated the previous concern for access to
prenatal information as a critical part of diagnosis, and
explained the four digit diagnostic code currently being used
with infants, which examines: growth deficiencies, facial
dismorphology, the central nervous system functionality/brain
damage, and maternal alcohol use. This system is more
beneficial than the meconium test called for in HB 312, and she
reiterated the need for doctors to document the prenatal use of
alcohol and attach it to the birth record.
4:58:16 PM
MS. CASTO directed the committee's attention to the information
page titled "Alaska's FASD Diagnostic Team Network 1/31/2006",
which provides a list of 13 [correcting the previous number]
diagnostic teams by name, service area, referral criteria, the
approximate wait time for a referred client to receive services,
and the contact person's information. Due to the demand, she
said that the teams are working in a backlog. She pointed out
that the average age for diagnosis in Alaska is ten, but the
department expects to reduce that to six. The referral criteria
does not indicate significant data on adult diagnosis, which she
highlighted is a critical area. Finally, she reported on a
federal grant which provided in-state training for the four-
digit diagnosis method, and also the federally earmarked
educational funds which launched last year's well-received media
campaign.
5:03:17 PM
REPRESENTATIVE GARDNER moved CSHB 312, Version 24-LS0241\Y,
Mischel, 1/23/06. There being no objection, Version Y was
before the committee.
5:04:35 PM
CHAIR WILSON provided directions to the committee for the
forthcoming CS.
[HB 312 was held over.]
5:06:09 PM
ADJOURNMENT
There being no further business before the committee, the House
Health, Education and Social Services Standing Committee meeting
was adjourned at 5:06 p.m.
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