02/17/2010 01:30 PM Senate HEALTH & SOCIAL SERVICES
| Audio | Topic |
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| Start | |
| SB219 | |
| Fetal Alcohol Spectrum Disorder | |
| Adjourn |
+ teleconferenced
= bill was previously heard/scheduled
| += | SB 219 | TELECONFERENCED | |
| + | TELECONFERENCED | ||
| + | TELECONFERENCED |
ALASKA STATE LEGISLATURE
SENATE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE
February 17, 2010
1:36 p.m.
MEMBERS PRESENT
Senator Bettye Davis, Chair
Senator Joe Paskvan, Vice Chair
Senator Fred Dyson
MEMBERS ABSENT
Senator Johnny Ellis
Senator Joe Thomas
COMMITTEE CALENDAR
SENATE BILL NO. 219
"An Act establishing a traumatic brain injury program and
registry within the Department of Health and Social Services;
and relating to medical assistance coverage for traumatic brain
injury services."
- MOVED CSSB 219(HSS) OUT OF COMMITTEE
PRESENTATION: Fetal Alcohol Spectrum Disorder
- HEARD
PRESENTATION: Bring the Kids Home Initiative
- SCHEDULED BUT NOT HEARD
UPDATE ON OFFICE OF CHILDREN'S SERVICES
- SCHEDULED BUT NOT HEARD
PREVIOUS COMMITTEE ACTION
BILL: SB 219
SHORT TITLE: TRAUMATIC BRAIN INJURY:PROGRAM/MEDICAID
SPONSOR(s): SENATOR(s) MCGUIRE
01/19/10 (S) READ THE FIRST TIME - REFERRALS
01/19/10 (S) HSS, FIN
02/15/10 (S) HSS AT 1:30 PM BUTROVICH 205
02/15/10 (S) Scheduled But Not Heard
02/17/10 (S) HSS AT 1:30 PM BUTROVICH 205
WITNESS REGISTER
SENATOR LESIL MCGUIRE
Alaska State Legislature
Juneau, AK
POSITION STATEMENT: Sponsor of SB 219.
ESTHER CHA
Aide to Senator McGuire
Alaska State Legislature
Juneau, AK
POSITION STATEMENT: Provided an overview of the CS for SB 219.
ANGELA SALERNO, health program manager
Division of Senior and Disabilities Services
Department of Health and Social Services (DHSS)
Juneau, AK
POSITION STATEMENT: Answered questions about SB 219.
MARTHA MOORE, chair
Alaska Brain Injury Network (ABIN)
Anchorage, AK
POSITION STATEMENT: Supported SB 219.
JEFF JESSEE, chief executive officer
Alaska Mental Health Trust Authority
Anchorage, AK
POSITION STATEMENT: Supported SB 219.
SCOTT HAMMOND, representing himself
Kenai, AK
POSITION STATEMENT: Was not opposed to SB 219 but believed that
it could result in unintended consequences.
NANCY MICHAELSON, representing herself
Palmer, AK
POSITION STATEMENT: Supported SB 219.
MARGARET CARLONI, representing herself
Anchorage, AK
POSITION STATEMENT: Supported SB 219.
JILL HODGES, executive director
Alaska Brain Injury Network
Anchorage, AK
POSITION STATEMENT: Supported SB 219.
DIANE CASTO, Manager
Prevention and Early Intervention Services
Division of Behavioral Health
Department of Health and Social Services (DHSS)
Juneau, AK
POSITION STATEMENT: Presented information on Fetal Alcohol
Syndrome Disorder (FASD).
DR. STERLING K. CLARREN, clinical professor of pediatrics
Child and Family Research Institute
Vancouver, British Columbia, Canada
POSITION STATEMENT: Presented information about FASD.
SHERRI WES, representing herself
Juneau, AK
POSITION STATEMENT: Presented information about FASD.
RENEE LELAND, representing herself
Anchorage, AK
POSITION STATEMENT: Presented information about FASD.
MARYBETH MOSS, tribal administrator
Hoonah Indian Association
Hoonah, AK
POSITION STATEMENT: Presented information about FASD.
ACTION NARRATIVE
1:36:17 PM
CHAIR BETTYE DAVIS called the Senate Health and Social Services
Standing Committee meeting to order at 1:36 p.m. Present at the
call to order were Senators Dyson, Paskvan and Davis.
SB 219-TRAUMATIC BRAIN INJURY:PROGRAM/MEDICAID
CHAIR DAVIS announced the consideration of SB 219.
1:37:39 PM
SENATOR MCGUIRE, sponsor of SB 219, said the bill establishes a
program and registry for traumatic brain injury (TBI) and
acquired brain injury (ABI) within the Department of Health and
Social Services (DHSS). Annually, over 800 Alaskans are
hospitalized with TBI due to accidents, domestic violence,
shaken baby syndrome and other causes. Approximately an equal
number of Alaskans suffer from ABI as a result of strokes,
aneurism or tumors. TBI and ABI affect rural and urban Alaskans
and record level of military members returning from Iraq. SB 219
will allow the state to track the number of brain injured
Alaskans in hopes of leveraging much needed federal dollars and
for rehabilitation, support and back-to-work programs.
Access to rehabilitation has allowed individuals with brain
injuries to live at home and return to school or work and engage
in a meaningful, productive life. She emphasized that T/ABI is
not a death sentence but without treatment the statistics are
grim. People with ABI and TBI can be a tremendous social cost to
the state as they go on to commit crimes, live in poverty and
homelessness or end up in jail. Service coordination and
rehabilitation may reduce future medical and social costs.
1:41:24 PM
SENATOR MCGUIRE said that by trying to track data with a brain
injury program and registry can help coordinate many efforts
made throughout the state and to leverage the much needed
federal dollars. A match of up to 60 percent federal funds would
be available through a combination of sources, largely Medicaid.
She asked that the committee adopt the committee substitute and
noted that Esther Cha has worked with DHSS on the changes.
1:43:17 PM
CHAIR DAVIS moved to adopt the proposed committee substitute to
SB 219, labeled Version R, as the working document of the
committee. There being no objection, the motion carried.
ESTHER CHA, aide to Senator McGuire, said the major change is
including "acquired" along with "traumatic brain injury" in the
title. Also, a pilot project in Section 6 of Version A was
removed because DHSS thought more planning would be needed. On
page 1, lines 13-14 establish the registry under AS
47.80.500(c)(1). Many changes in Version R relate to
establishing the registry and the program under AS 47, which is
"persons with disabilities" rather than Title 18, which deals
with public health. This change was recommended by DHSS because
the Senior and Disabilities Services currently manage Medicaid
waivers, case management, aging and disability resource centers
and hospital discharge grants.
1:45:48 PM
ANGELA SALERNO, health program manager, Division of Senior and
Disabilities Services, Department of Health and Social Services
(DHSS), said her division is the agency responsible for the TBI
program in the state and would take on these duties. In Section
2 [amending AS 47.07.030(b)], DHSS gets authority to seek a
Medicaid state plan amendment to add case management for people
with TBI. Targeted case management is a straight state Medicaid
service which would be added to the list of optional services
currently in Alaska for Medicaid.
1:47:28 PM
MS. SALERNO said Section 3 [AS 47.07.030] of SB 219 adds a
definition for case management that the division believes is
problematic because it is not consistent with the federal
definition of targeted case management. The division is
concerned that if the definition goes into statute, the Centers
for Medicaid/Medicare may disallow any claims the state made for
targeted case management. She suggested changing SB 219 to refer
back to the federal definition.
SB 219 requires DHSS to serve people with TBI under a Medicaid
waiver; DHSS did not develop a fiscal note for a new waiver
program because DHSS already serves people with TBI on its
current waivers. Currently, DHSS is serving 102 people on
Medicaid waivers with TBI because they meet the definition of
nursing home level of care. DHSS does not feel developing
another waiver is necessary.
1:49:35 PM
CHAIR DAVIS asked Ms. Salerno if changing the definition for
case management in Section 3 back to the federal definition is
her only suggested change to SB 219.
MS. SALERNO responded yes and said DHSS otherwise has a neutral
position on SB 219.
1:50:22 PM
MARTHA MOORE, chair, Alaska Brain Injury Network (ABIN),
supported SB 219. ABIN has done an assessment of the service
system across Alaska for TBI survivors. She referred to a
document called, "Fractured and Inadequate" which shows the
continuum of care for a TBI survivor. ABIN identified the gaps
in the system. Case management is needed, as well as data
recording and rehabilitation after hospitalization. ABIN has
written a 10 year plan and has gathered an array of partners to
help accomplish this task, including the military, Mental Health
Trust, Alaska Native Medical Center, state and private agencies.
1:52:56 PM
ABIN feels that SB 219 provides a framework to move forward. The
TBI registry will track a patient from injury to functional
outcomes, showing treatment and rehabilitation time-tables
linked to the patient's recovery, functional outcomes and
reintegration into society. This information will provide the
standards of care, protocols, recommendations for treatment and
the services that lead to independent living. The registry will
also allow a continual reassessment of the gaps in the system.
1:54:20 PM
JEFF JESSEE, chief executive officer, Alaska Mental Health Trust
Authority, said the Trust supports SB 219. He stressed the link
to veterans returning to Alaska with TBI. Alaska three
continuums of care for people with TBI: the tribal system, the
Department of Defense and VA system and the state system. These
systems need to be combined to create a comprehensive and cost-
effective service but the state currently has nothing to offer
as a partner. SB 219 starts a state response and gives the state
something to offer to the other systems of care.
1:56:46 PM
SCOTT HAMMOND, representing himself, Kenai, said he is not
opposed to SB 219 but believes that a provision in Version R
could have unintended consequences: Article 5(a), Sec
47.80.500(3) on page 4. This provision could lead to a call for
a mandatory motorcycle helmet law. He assured the committee that
Alaska's lack of requirement for motorcyclists to wear helmets
does not create a problem with TBI for motorcycle riders.
He recommended that the committee modify the provision by
removing the words "and laws" and "to the prevention of
traumatic or acquired brain injury". The provision would then
read: "evaluation of standards pertaining to the treatment, care
and support of persons with traumatic or acquired brain injury".
1:59:19 PM
CHAIR DAVIS asked if he was reading from Version R of SB 219 and
if so, what page.
MR. HAMMOND replied, yes, he was referring to Version R, page 4.
1:59:45 PM
NANCY MICHAELSON, representing herself, Palmer, said she and her
husband care for their 26 year old son, who lives with them, due
to a disability resulting from TBI. SB 219 is comprehensive and
will be welcomed by Alaskans affected by TBI. Her son has been
disabled for seven years. Without the Medicaid waiver program,
her family could not have managed her son's round-the-clock care
nor would he have the quality of life that he now has. The
services available through the Medicaid waiver program are
helping her son progress toward more movement and speech. She
listed the following as the best aspects of SB 219: One, the
clarification of the definition of TBI; two, assistance to find
practitioners familiar with TBI who can be part of a coordinated
care team; and three, smartly positioning Alaska for future
funding for brain injury services.
2:03:49 PM
MARGARET CARLONI, registered nurse, Anchorage, supported SB 219.
She said the inability to offer more to TBI patients is
heartbreaking and frustrating. Acute rehabilitation is available
in some locations but the real gap is for cognitive rehab or
long-term housing for severely injured patients. About 34
percent of TBI's are Alaska Native people and very little is
available in small communities. She hopes that SB 219 will help
gather more data to consider the gaps around the state.
2:05:50 PM
JILL HODGES, director, Alaska Brain Injury Network, Anchorage,
supported SB 219. She related a story about her brother and his
brain injury five years ago. He and her family went through
intense brain injury rehab, a period of gratefulness for his
life and then realizing the difficulty managing his injury. He
suffered severe depression, began drinking and had run-ins with
the law. Now her brother is in college and understands his own
disability. SB 219 gives families more opportunity for support.
2:08:29 PM
SENATOR MCGUIRE spoke to DHSS's concern with the definition of
case management in Version R, page 2, section 3, line 21. She
said DHSS's concerns centered around the inclusion of housing in
case management on line 30. She noted that housing is a big part
of the equation but eliminating "including housing", rather than
incorporation the federal definition, should address DHSS's
concerns.
2:10:13 PM
CHAIR DAVIS asked if Senator McGuire had spoken to DHSS about
this suggested change.
MS. MICHAELSON said no.
SENATOR MCGUIRE said the committee can decide if the federal
definition is used or the words "including housing" are removed.
Asking DHSS would be the right thing to do.
Regarding Mr. Hammond's testimony about helmet laws, she
understood his concern to be about the evaluation of standards
and law that pertain to the prevention of TBI. She noted that
the proposed statewide committee in SB 219 is not a law-making
committee. Though the committee will have the ability to assess
standards and laws, changing any law is still in the hands of
lawmakers as influenced by people. She proposed keeping that
provision the way it is.
CHAIR DAVIS said she agrees with Senator McGuire that the
language on page 4, lines 7-9, does not need to be changed.
2:13:52 PM
SENATOR MCGUIRE referred to the discussion about whether or not
a waiver is needed. Although 100 TBI people are now being served
through various channels, many more TBI survivors would benefit
from the kind of program laid out in SB 219. Having a specific
waiver is appropriate.
SENATOR DYSON noticed that Version R has the phrase "acquired
brain injuries". Looking at 47.80.590, which is the definition,
he asked Senator McGuire to clarify whether or not her intent is
to include brain injuries that are not as a result of a physical
trauma, such as a stroke.
2:16:31 PM
SENATOR MCGUIRE replied that she believes something like Fetal
Alcohol Syndrome (FAS) is an acquired brain injury. If the brain
structure started out healthy and was exposed to drugs or
alcohol in the womb, that person can go on to live a life with
brain damage. She believes brain damage from a strangling or
hypoxia, etc, is also acquired. DHSS was concerned about opening
it up to all congenital brain injuries because DHSS already has
places to deal with that. An acquired brain injury is one that a
person did not start out with congenitally; the person had a
normal brain structure at some point. She envisions things like
blunt force trauma or deprivation of oxygen to be incorporated.
2:18:28 PM
MS. HODGES said states began defining brain injury in statute 30
years ago and it was solely traumatic. However, provider
services are very similar for those with stroke, aneurism,
tumors, encephalitis, etc., and providers cannot sustain a
program serving only those with TBI. Some states exclude
congenital and degenerative brain injuries, such as Alzheimer's,
because they have very different service needs. In Alaska, a
person born with a developmental disability (DD) is served under
the DD population and services.
2:20:06 PM
SENATOR DYSON said other than physical trauma, the issue [of
brain injury] is blurred. Diagnosing fetal alcohol spectrum
disorder (FASD) is difficult. He cautioned that Senator McGuire
is introducing a subjective element that could have major fiscal
consequences.
SENATOR MCGUIRE said that assessments are not made through the
legislature but as part of DHSS's assessments by their
physicians. She said she initially began advocating for blunt
force trauma brain injuries but Senator Dyson's leadership has
brought ABI issues to light too. The question is at what point
people with ABI interface with DHSS to receive a waiver under
another category. She is not prepared to exclude people with
certain types of brain injury today. She is relying on the DHSS
experts and their evaluation to determine if the legislation
needs to be narrowed.
2:23:15 PM
SENATOR DYSON encouraged Senator McGuire and the experts to
think about this issue and make her intention, as the sponsor,
very clear because the courts will look at it.
SENATOR PASKVAN clarified that Senator McGuire is suggesting
removing the words "including housing" from page 2, line 30, in
order to avoid jeopardizing future available funding.
SENATOR MCGUIRE replied, "yes".
CHAIR DAVIS clarified that is the only change at this time.
2:24:14 PM
SENATOR PASKVAN offered Conceptual Amendment 1 to CSSB 219(),
Version R: He moved to withdraw "including housing" from page 2,
line 30. There being no objection, the motion carried.
CHAIR DAVIS asked Ms. Solerno to comment on that change.
MS. SALERNO said another item in the definition is problematic:
the wording of strengthening local capacity [page 2, line 29].
She noted that case management services are for individuals, not
for communities or localities. She believed removing that
wording would make the section work for DHSS.
SENATOR MCGUIRE said that was acceptable to her. After the word
"expand" the words "and strengthen the local capacity for
delivery of needed services, including housing" can be removed.
CHAIR DAVIS said SB 219 has another committee to go through,
which will allow DHSS to check with their attorneys and address
the issue again if needed.
2:26:50 PM
SENATOR PASKVAN offered Conceptual Amendment 2 to CSSB 219(),
Version R: He moved to remove the words from line 29, after the
word "expand" up to the word "for" on line 30. There being no
objection it was so amended
2:27:43 PM
SENATOR PASKVAN moved to report the CS for SB 219, version R as
amended, from committee with individual recommendations and
attached fiscal note(s).
CHAIR DAVIS announced that without objection, CSSB 219(HSS)
moved from the Senate Health and Social Services Standing
Committee.
2:28:26 PM
^FETAL ALCOHOL SPECTRUM DISORDER
CHAIR DAVIS announced the final order of business would be a
presentation on fetal alcohol spectrum disorder.
2:29:56 PM
DIANE CASTO, manager, Prevention and Early Intervention
Services, Division of Behavioral Health, Department of Health
and Social Services (DHSS), Juneau, and, manager, Office of
Fetal Alcohol Syndrome introduced herself and Dr. Clarren.
DR. STERLING K. CLARREN, clinical professor of pediatrics, Child
and Family Research Institute, Vancouver, British Columbia,
Canada, noted that he spent most of his career at the University
of Washington and came to Alaska frequently where he did most of
the state's fetal alcohol spectrum disorder (FASD) diagnoses for
10 or 12 years.
2:31:48 PM
MS. CASTO recognized Senator Dyson's efforts to address FAS and
FASD in Alaska. An earmark of $27 million from U.S. Senator Ted
Stevens also launched many efforts. Limited diagnostic capacity
made it difficult to understand the magnitude of the problem in
Alaska until recently. Alaska now has 10 diagnostic teams and
over 150 individuals are diagnosed every year. A thorough
diagnosis is the first step to services.
2:35:05 PM
Getting the word out about FAS and FASD was also very important.
In 1988, a lot of people still did not know that it was not ok
to drink during pregnancy. A strong, comprehensive media message
was spread to say alcohol during pregnancy is not ok. The state
has changed the social norm around that issue.
Alaska has one of the most comprehensive surveillance systems
through the Alaska birth defects registry program. She noted
that Commissioner Bill Hogan will announce FASD prevalence rates
at tomorrow's Southeast Alaska FASD conference. Alaska has seen
a significant decrease.
2:38:05 PM
SENATOR DYSON interjected and said that Ms. Castro minimizes her
own part in the progress. Alaska had nothing when Ms. Castra
started and it now has one of the better programs in North
America. He asked Dr. Clarren if FASD was first diagnosed at the
University of Washington.
DR. CLARREN replied yes.
SENATOR DYSON recalled that the University of Washington
research brought FASD to the attention to the whole world.
CHAIR DAVIS confirmed that the Alaska legislature has done a lot
with FASD and is at the top of the list for something good.
2:40:41 PM
DR. CLARREN said a diagnosis is family wide and lasts a
lifetime. That alcohol causes the FASD is only important for
prevention; for the victims it is irrelevant - they have a
traumatic brain injury that is prenatal in origin and will last
a lifetime. It is up to the legislature to decide whether or not
to incorporate people with FAS into SB 219. People with TBI
often have trouble with motor skills which is an obvious
disability but beyond that TBI people and FAS people have
similarities: trouble with planning, judgment, communication,
social relations, etc. It comes down to mal-adaptation. The
question is how to separate people who are maladapted due to
carelessness or even a bad environment from people who are
maladapted due to organic brain damage. It remains a medical
challenge. The legislature's next mission is how to embrace
people with FAS for a lifetime of need.
2:43:52 PM
SHERRI WES, representing herself, said she is the adoptive
mother of an 18 year old with FASD. Her daughter does not look
different but her biological mother drank through her pregnancy.
Ms. West could not figure out why her daughter was struggling to
learn. They moved to Juneau 18 months ago and a psychiatrist
familiar with FASD diagnosed her daughter. Her daughter wants to
be a normal 18 year old, on her own, but she can't. Ms. Wes
structures her daughter's day, is her support system and her
external brain. Her daughter does not fit anywhere; no services
are available; her IQ is too high. If Brooke was on her own, she
would forget to take her medicine, could not follow a schedule
or handle money.
SENATOR DYSON interjected that Ms. Wes' daughter would be
victimized.
MS. WES agreed. She said her daughter is excessively friendly
and charming. She is excellent with babies and the elderly.
However, she cannot filter out who is a risk and who is not. Ms.
Wes is exhausted but no one can help. Transitional housing is
not structured enough and she cannot get a case manager. She
asked the legislature to take the next step to for services that
fit FAS young adults.
2:48:45 PM
RENEE LELAND, representing herself, has a 10 year old son with
FASD. Her son's birth mother was arrested when 3 months pregnant
and was given the opportunity to go to Dena A Coy, a substance
abuse center for pregnant women. Ms. Leland feels that without
that treatment, her son would either not be alive or would be
severely damaged. Her son missed developmental milestones but
did have some services in Anchorage.
She told the story of her son's teacher calling to say everyone
in the class, except her son, had memorized a poem. As a reward,
the students were going to a water park and her son was not
allowed to go. Ms. Leland tried to explain that her son could
not memorize the poem. Her son was devastated and was receiving
a message that he was stupid and would be punished. She took her
son on another field trip that day. She asked the committee to
think of her son when they consider any legislation for
education, prevention, therapies in rural areas, substance abuse
treatment centers for moms, etc.
2:53:02 PM
MARYBETH MOSS, tribal administrator, Hoonah Indian Association,
Hoonah, said her daughter is 3 years old and was given up by her
23 year old Tlingit mother. The baby came with a bundle of
clothes, books, blankets and a journal filled with stories and
poems that the girl's birth mother wanted her to have. The last
page of the journal said the baby had been exposed to alcohol,
marijuana, oxycontin and crack cocaine every day of her prenatal
existence. Her daughter was initially happy and healthy and
passed developmental milestones. However, in February, 2008,
they came to Juneau for diagnostic tests and walked out
shattered. They had to return to Hoonah which has no services or
providers familiar with FASD, its affects or treatment options.
Ms. Moss learns from the internet and talking to other parents.
Her daughter's Tlingit name means "return to her rightful
place". The tribal council thought the little girl would have
the best of both the Western and Tlingit worlds and would be a
powerful leader. Ms. Moss and her husband want their daughter to
be a leader and for FASD children to grow and serve in their
rightful place. She asked the legislature to support FASD
funding now and in the future.
2:58:11 PM
CHAIR DAVIS apologized for having to cut the meeting short but
advised that another meeting was beginning and the committee
must adjourn. The other presentations would be rescheduled.
2:58:48 PM
CHAIR DAVIS, seeing no further business to come before the
committee, adjourned the meeting at 2:58 p.m.
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