Legislature(2007 - 2008)CAPITOL 106
02/08/2007 03:00 PM House HEALTH, EDUCATION & SOCIAL SERVICES
| Audio | Topic |
|---|---|
| Start | |
| Presentation: Early Intervention and Autism Services | |
| Adjourn |
* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
+ teleconferenced
= bill was previously heard/scheduled
| + | TELECONFERENCED | ||
| *+ | HB 29 | TELECONFERENCED | |
| + | TELECONFERENCED |
ALASKA STATE LEGISLATURE
HOUSE HEALTH, EDUCATION AND SOCIAL SERVICES STANDING COMMITTEE
February 8, 2007
3:07 p.m.
MEMBERS PRESENT
Representative Peggy Wilson, Chair
Representative Bob Roses, Vice Chair
Representative Anna Fairclough
Representative Mark Neuman
Representative Paul Seaton
Representative Berta Gardner
MEMBERS ABSENT
Representative Sharon Cissna
COMMITTEE CALENDAR
PRESENTATION: EARLY INTERVENTION AND AUTISM SERVICES
- HEARD
HOUSE BILL NO. 29
"An Act relating to infants who are safely surrendered by a
parent shortly after birth."
- BILL HEARING CANCELED
PREVIOUS COMMITTEE ACTION
No previous committee action to record
WITNESS REGISTER
MILLIE RYAN, Executive Director
Governor's Council on Disabilities and Special Education
Office of the Commissioner
Department of Health and Social Services
Anchorage, Alaska
POSITION STATEMENT: Presented an overview on early intervention
and autism services, and responded to questions.
KATHY FITZGERALD, Chair
Governor's Council on Disabilities and Special Education
Anchorage, Alaska
POSITION STATEMENT: Presented an overview on early intervention
and autism services, and responded to questions.
KATHY ALLELY
Health and Social Services Planner
Governor's Council on Disabilities and Special Education
Anchorage, Alaska
Department of Health and Social Services
POSITION STATEMENT: Presented an overview on early intervention
and autism services, and responded to questions.
ACTION NARRATIVE
CHAIR PEGGY WILSON called the House Health, Education and Social
Services Standing Committee meeting to order at 3:07:08 PM.
Representatives Wilson, Fairclough, Neuman Seaton, Gardner, and
Roses were present at the call to order. Representative Cissna
was excused.
^PRESENTATION: EARLY INTERVENTION AND AUTISM SERVICES
3:07:24 PM
CHAIR WILSON announced that the only order of business would be
a presentation on Early Intervention and Autism Services.
3:09:33 PM
MILLIE RYAN, Executive Director, Governor's Council on
Disabilities and Special Education, Office of the Commissioner,
Department of Health and Social Services (DHSS), explained that
the Governor's Council on Disabilities and Special Education
(Council) consists of 28 members who are appointed by the
governor. Sixty percent of the Council's members are persons
with disabilities or family members of persons with
disabilities; the remaining members are representatives of state
agencies, service providers, or university representatives. The
Council is not a direct service provider; rather it helps to
plan, advise, and assist the state in providing services for
those with developmental disabilities and other severe
disabilities. She explained that the Council works with various
stakeholders and service providers to examine issues, such as
autism, and develop recommendations for future state services
and allocation of funds.
3:12:06 PM
MS. RYAN explained that the Council also reports to the Alaska
Mental Health Trust Authority (AMHTA) about the status and needs
of people with developmental disabilities and makes budget
recommendations. The three types of budget recommendations the
Council makes to the AMHTA are recommendations for systems
change, short-term capacity building projects, and general fund
allocations. If accepted by AMHTA, these funding
recommendations are forwarded to the governor, who may then
choose whether to include the requested items in the budget
presented by the governor to the legislature, she said.
3:14:27 PM
MS. RYAN turned to the PowerPoint titled, "Early Intervention in
Alaska", which was provided to the committee. She informed the
committee that early intervention provides a "once in a lifetime
window" to help those with disabilities develop in a healthy
way. Early intervention is a less costly, more successful
approach than later intervention, she opined. She then informed
the committee that at birth 1-2 percent of infants have
discernable disabling conditions, such as spina bifida, Down's
syndrome, or cerebral palsy. During the next few years of life,
other additional cognitive, emotional, and motor problems become
evident. By the time children enter pre-school or kindergarten,
10-12 percent have some degree of disability. The research
indicates that some of those children could have been diagnosed
and provided early intervention prior to school. Furthermore,
for those with less severe delays, receiving early intervention
may not have resulted in needing special education or not as
much of it.
3:16:47 PM
MS. RYAN informed the committee that several studies have
illustrated the benefit-cost ratio of early intervention. The
longest conducted study is the [Lifetime Effects: The High/Scope
Perry Preschool Study through Age 40]. She said that when
compared to the control group, those who received early
intervention required less special education, had less
involvement with the law, tended to earn more money [than the
control group], and participated more in the community. She
noted that there have been several other studies that concluded
at "age 21 or so." The "benefit-cost ratio ranges" from $17-$4,
she related. The Colorado Intervention Program was a study in
which children with disabilities participated in an early
intervention program in which the return was $4.00 to $1.00.
3:18:07 PM
REPRESENTATIVE NEUMAN asked whether the term "benefit-cost
ratio" means benefit to society or benefit in economic value to
the communities as compared to what the state has invested.
MS. RYAN replied that the term encompasses both societal and
economic benefits to the individual. In further response to
Representative Neuman, Ms. Ryan indicated that the committee
packet should include information regarding how the benefit
amount was established. She mentioned that the [Lifetime
Effects: The High/Scope Perry Preschool Study through Age 40]
utilized economists to develop how to collect and analyze the
information.
REPRESENTATIVE NEUMAN expressed the need to have on record the
accountability of the figures used.
3:20:10 PM
CHAIR WILSON stated that last year the committee heard a
presentation from an economist who addressed this issue and
explained how the numbers are calculated. Last year's speaker
explained that early intervention really made a difference in
the long run because the study subjects weren't going through
the court system, she recalled.
3:21:17 PM
REPRESENTATIVE SEATON expressed concern with regard to the lack
of discussion/information regarding any steps being taken to
prevent autism. He related his understanding that lead and one
other thing accounts for at least one third of the autism.
There has also been recent information, he recalled, regarding
the use of sonograms during pregnancy perhaps contributing to
autism.
3:23:13 PM
KATHY FITZGERALD, Chair, Governor's Council on Disabilities and
Special Education, Department of Health and Social Services,
responded that autism is a diagnosis that has been late to be
recognized or defined. Furthermore, there is a great deal of
speculation and controversy within the medical community about
what causes autism. Autism tends to run in families and thus
there is a genetic component to autism. However, the parameters
of the genetic components are not defined. There is still a
controversy about what causes autism, therefore the steps to
prevent it are not yet clear. This is an issue that is being
studied, she told the committee, particularly in view of the
[fact] that 1 in 166 people are being diagnosed with autism.
However, there is not even consensus within the autism community
itself as to how to treat autism. Therefore, if the Council has
not brought forward anything on prevention, it is because it
really does not have anything to offer in that realm other than
that early intervention tends to lessen the [degree] of the
condition. "I don't think there's anything out there that's
telling us now that we can prevent it, other than perhaps
avoiding immunizations that have mercury in them," she said.
MS. RYAN informed the committee that with enactment of "The
Combating Autism Act of 2006" at the federal level, there should
be a lot more money for research and development of data systems
for autism.
CHAIR WILSON commented that many doctors are limiting the use of
ultrasound technology during pregnancy and there are efforts to
remove mercury from vaccines.
REPRESENTATIVE SEATON related that not all doctors or ultrasound
technicians are necessarily aware of the research linking
ultrasound use with the increased incidence of autism.
MS. RYAN characterized Representative Seaton's suggestion that
the Council provide some literature on the possible linkage
between excessive ultrasound use during pregnancy and autism as
an excellent suggestion. She mentioned that the Council works
closely with the Division of Public Health in terms of
prevention activities.
3:30:14 PM
MS. FITZGERALD emphasized that there is still a great deal to
learn about autism and much of the information is passed along
in an informal way, such as recommending that parents assure
that any vaccines offered their children are indeed free of
mercury. However, documented knowledge as to what causes or
contributes to autism is minimal at this time and until there is
more known, much about autism is speculation, she cautioned.
3:32:37 PM
MS. RYAN turned to the State Early Intervention/Infant Learning
Program (EI/ILP), which in fiscal year 2006 (FY 06) served 1,800
children from birth to age 3, at an average cost of $5,500. Of
those served, approximately 14 had a diagnosis of autism. The
state provides a mix of services that focus on both the child
and the parent. She told the committee that children with a
diagnosed condition that will lead to a significant delay, such
as Down's Syndrome, severe cerebral palsy, spina bifida, or a
developmental delay of 50 percent or greater in one area of
development must be served by the EI/ILP under the state and
federal guidelines. In contrast, children with a 15-49 percent
delay may receive EI/ILP services as funds allow. Alaska has a
very restrictive eligibility criteria in comparison to other
states, some of which set their eligibility criteria at around
25 percent, while Alaska's is set at around 50 percent.
Therefore, many of Alaska's children [in need] aren't being
served. Moreover, research indicates that some of those
children [not being served] are the ones who would benefit the
most from early intervention and be less likely to need special
education. She highlighted that preschool special education
services must be provided to children with a 25 percent delay in
two areas of development. Ms. Ryan, in response to Chair
Wilson, related her belief that this restrictive criteria is
contained in regulation, not statute.
3:35:28 PM
MS. FITZGERALD noted that in special education a 25 percent
developmental delay is considered very significant and children
are screened for it. However, that same population is excluded
from infant learning services, which would make a difference.
MS. RYAN clarified that if there is sufficient funding, children
with a 25 percent developmental delay can be served.
3:36:14 PM
MS. RYAN related that in 2005-2006 in the Matanuska-Susitna
School District 109 children were determined to be eligible for
preschool special education, but were never enrolled in EI/ILPs.
Although some of them may not have been identified, some of
these children were identified as having delays in the range of
15-49 percent. However, those children didn't receive any
services due to lack of funding. These aforementioned children
were identified in preschool. Therefore, if children aren't
enrolled for preschool, they may not even be identified or
receive services until they enter kindergarten at age five.
3:36:48 PM
MS. RYAN, in response to Representative Neuman, explained that
the school district is prepared and has to serve these children
under the eligibility [criteria]. The difficulty is that the
EI/ILP doesn't have enough funds to serve all potentially
eligible children.
MS. FITZGERALD mentioned that Alaska was one of the first states
to provide infant learning programs prior to it being a federal
[requirement]. The state, she recalled, was cautious when it
did so and the thinking was that as the state progressed the
[criteria] would be brought down to the 25 percent. However,
the state hasn't reached that point.
3:38:16 PM
MS. RYAN interjected that a number of things are occurring this
year. For instance, the EI/ILP grants were reduced by 6 percent
as some of the refinancing ideas didn't come to fruition.
Furthermore, more children with autism and Fetal Alcohol
Spectrum Disorder (FASD) are being served, which places pressure
on the existing system. Moreover, the federal directive to
increase child find and enrollment places [states] in a bind
when they can't really serve those children. Federal law now
requires that a child must be referred for early intervention
screening when there is a substantiated case of child abuse or
neglect or the child is affected by illegal substance abuse or
withdrawal symptoms from prenatal drug exposure. The
aforementioned merely determines whether the child needs a
multi-disciplinary evaluation. The sites of Anchorage,
Fairbanks, and Juneau have produced findings from 100 referrals
and screenings, as follows: 60 multi-disciplinary evaluations
were done, 17 required service, and 3 were eligible but would
only be served if funds are available.
3:40:01 PM
REPRESENTATIVE NEUMAN inquired as to whether the 6 percent
reduction in grants were from the federal or state government or
a combination thereof.
MS. RYAN specified that there is a mix of federal and state
funds that is managed by the Infant Learning Program and the
Office of Children Services (OCS). She answered that the
reduction was to the state grants. She related her
understanding that some financing [possibilities] didn't come to
fruition. In further response to Representative Neuman, Ms.
Ryan said she would provide the committee with information
regarding how much money the state puts into this program and
how much it has been reduced/increased over the last two years.
3:41:18 PM
MS. RYAN continued her presentation by relating that the Council
is working with OCS on ways in which to increase funding for
early intervention. In fact, Targeted Case Management through
Medicaid was implemented in August 2006 and programs are
beginning to bill. Although Medicaid can be billed, the
concern, she opined, is that still no more children are being
served if the grants continue to decrease. She then informed
the committee that intensive resource mapping is occurring at
the state and federal level with the assistance of a national
technical assistance expert who knows what other states have
done. The Council is also reviewing how it can partner,
particularly with the child protective side of OCS. She then
related that a presentation is scheduled for the EI/ILP
providers in regard to developing a broad stroke financing plan
both at the state and local level. There will also be a cost
study in order to identify the following: costs to deliver
services in urban, rural, and remote locations; other sources of
funds being used to deliver early intervention; compare findings
against other states; and model alternative financing systems
and structures.
3:42:48 PM
CHAIR WILSON asked if the aforementioned cost study will review
the cost of not having early intervention.
MS. RYAN said that the Council has the opportunity to influence
that.
3:43:33 PM
REPRESENTATIVE NEUMAN inquired as to how programs such as EI/ILP
will be impacted by the [proposed] revamping of the health care
system.
CHAIR WILSON reminded the committee that there have been some
large changes in health care over the last five years that are
just beginning to settle. Therefore, she said that the
committee would invite the department to explain how all these
changes [and the proposed changes] will fit together.
REPRESENTATIVE NEUMAN related his interest in hearing from the
department how individual divisions are impacted.
CHAIR WILSON highlighted that the committee can recommend what
it feels is important and pen a letter with those to the
department. Chair Wilson opined that there is so much more that
can be done for intervention and prevention and it would save
money in various areas, including the correctional system, the
court system, and the schools.
3:46:26 PM
MS. RYAN continued reviewing promising solutions. She
highlighted that the [Council] is reviewing how to maximize
Medicaid funds; how other states have maximized the use of
private insurance to support early intervention; and how to
deliver services through distance technology. Ms. Ryan then
moved on to the recommendations, which include the state funding
a $1 million increment for EI/ILP. The aforementioned isn't
included in the governor's budget, she noted. However, the
aforementioned funding would enable the state to serve those
children with the less severe delays as well as to better
screen, evaluate, and provide services of children who are
victims of abuse and neglect. Furthermore, [the funding] would
build the capacity of the providers to better serve children
with autism and socially emotional problems.
3:47:55 PM
CHAIR WILSON inquired as to who performs the early intervention
screening.
MS. RYAN answered that screenings can come from the hospitals,
the visiting nurses, parents, or a health fair.
3:48:38 PM
REPRESENTATIVE GARDNER inquired as to how the distance learning
would work when it seems that many of the interventions,
particularly for autism spectrum disorders, are labor intensive
one-on-one situations.
MS. RYAN confirmed that parents could be taught to perform the
interventions or aides may do so. Ms. Ryan opined that more
distance education could be provided.
3:49:19 PM
REPRESENTATIVE FAIRCLOUGH inquired as to the average case load
of an individual training those for actual interventions if the
$1 million investment actually occurs.
MS. RYAN responded that it would vary because a child may be
receiving occupational therapy from an occupational therapist
and speech therapy from another individual.
3:49:59 PM
REPRESENTATIVE FAIRCLOUGH asked, "How can you quantify for me
why I should invest $1 million and what does it accomplish?"
3:50:06 PM
KATHY ALLELY, Health and Social Services Planner, Governor's
Council on Disabilities and Special Education, Department of
Health and Social Services (DHSS), informed the committee that
the average case load is 12-15 families.
MS. RYAN, in further response to Representative Fairclough,
related that the average cost is about $5,500. Therefore,
dividing the $1 million by the $5,500 would provide an idea as
to how many children would be served.
3:50:37 PM
REPRESENTATIVE FAIRCLOUGH pointed out that there will be fairly
significant administrative overhead costs, which is why she was
interested in the number of cases that can be addressed over a
one-year period with the investment of $1 million. She then
asked if the $1 million for FY 08 would be spent in one fiscal
year or would there be a ramp-up time such that the $1 million
would carry forward longer.
MS. RYAN reminded the committee that there was a $700,000
increment a few years back in which there was no difficulty
spending. She said that there are definitely kids in need of
services. However, she acknowledged that sometimes there is a
shortage of staff, which may slow things.
MS. FITZGERALD related that intensive infant care is one of the
areas in which [the Council] has heard from infant learning
providers and families that there is a need for in-depth
technical assistance to work with infant learning providers and
families with regard to the mental health issues of children
ages up to age three. Currently, the infrastructure or
expertise to provide some of the [in-depth technical assistance]
doesn't exist. Therefore, part of the $1 million would provide
technical assistance statewide to the existing ILP staff as well
as providing services to more children.
MS. RYAN estimated that approximately 100 children would
probably be served with the $1 million.
REPRESENTATIVE FAIRCLOUGH related that when someone makes a
financial request, she is accustomed to a budget accompanying
it.
3:54:11 PM
MS. RYAN continued her presentation and highlighted the other
recommendation, which is for the establishment of a legislative
task force to study the feasibility of billing private health
insurance in a manner similar to that of New Mexico. Bringing
health plans to the table will create a variety options, she
opined.
3:56:07 PM
MS. ALLELY turned to the presentation regarding autism. She
related that in Alaska 1 in 166 children develop autism. She
then highlighted the slide entitled, "What has been done," which
relates what has been done to improve the situation for families
and children with autism. The result has been to convene an Ad
Hoc Committee on Autism, which met to develop recommendations to
present to the legislature and the administration. The Ad Hoc
Committee on Autism prioritized what it wanted to work on as
follows: screening, identification and diagnosis, and services.
The committee formed because although much had been done, there
is an urgent need [to bring recommendations to fruition]. Ms.
Allely then focused on the top four recommendations. The first
recommendation is to expand autism resources and referral
services so that the program is well funded, independent, and
highly visible. The Alaska Mental Health Trust Authority and
the Department of Education and Early Development, she related,
have and will continue supporting this goal. This goal is
important because parents, stakeholders, and providers need help
understanding autism and knowing what to do about it.
MS. ALLELY then turned to the second recommendation, which is
the universal screening for autism spectrum disorders. The
aforementioned could be accomplished during well-child checkups
and would use a Modified - Checklist for Autism in Toddlers (M-
CHAT). The checklist, which can be done in a short time and
easily scored, consists of 23 questions to be completed by the
parent. In response to Chair Wilson, Ms. Allely said that the
checklist is quite easy and can be downloaded from the Internet.
However, she emphasized that the screening doesn't take the
place of a diagnosis, rather it's simply a check to determine if
there needs to be an evaluation. In further response to Chair
Wilson, Ms. Allely specified that this particular check can be
utilized at ages as early as 16-18 months. The prevalence of
autism is believed to be rising substantially, and therefore
it's important to screen so as not to miss any children.
4:00:54 PM
MS. ALLELY moved on to the third recommendation, which would
increase the capacity for comprehensive, timely assessments and
diagnosis using a multidisciplinary team and systematic referral
to appropriate services. She explained that the comprehensive
assessment is what children would be referred to if a screening
exhibited cause for concern. The comprehensive assessment needs
to be a multidisciplinary evaluation with a medical provider who
specializes in neurodevelopmental aspects of early childhood.
Such a medical provider is necessary in order to rule out any
medical condition that could be responsible for what's happening
to the child.
4:01:54 PM
CHAIR WILSON inquired as to how many physicians in Alaska can
[perform the assessments].
MS. ALLELY replied one.
MS. FITZGERALD interjected that it took a long time to recruit
for that one physician.
4:02:21 PM
MS. ALLELY informed the committee that the other aspects of this
type of evaluation and assessment would be cognitive testing
that's performed by a psychologist; a speech and language
assessment; a fine and gross motor evaluation; and a hearing and
vision evaluation.
MS. FITZGERALD related that with her daughter, the lack of
response to her name led to hearing tests. She explained that
the combination of symptoms makes it difficult to identify
autism as other potential causes have to be ruled out.
Therefore, a multidisciplinary team is necessary.
MS. ALLELY opined that one of the benefits of an evaluation is
determining the appropriate intervention for the diagnosis.
Furthermore, the evaluation identifies the child's strengths and
weaknesses in order to build on the strengths.
4:03:57 PM
MS. ALLELY moved on to the fourth recommendation, which is to
change Medicaid to ensure that children with autism spectrum
disorders are able to receive time-limited, intensive
intervention services. The aforementioned could be accomplished
by applying for an autism home and community-based waiver;
amending the state Medicaid Plan such that "it's a service
that's offered under straight Medicaid." She mentioned that
earlier this week she learned that the "11(15)(a)" waiver might
provide a way in which the state could [provide] services for
children. However, the services are time-limited because there
is an early window of opportunity during which the child's
development can be influenced. Offering such to families with
autistic children for a three-year period would make an enormous
difference.
4:05:28 PM
MS. ALLELY then directed the committee's attention to a study
based in Wisconsin, which is included in the committee packet.
This study replicated one of the earliest studies performed on
autism and reviewed the specific intervention of applied-
behavioral analysis. That Wisconsin study was able to replicate
the findings of the original study and found that about half of
the children gained normal functioning after two to three years
of treatment. Furthermore, an average of 22 IQ points were
gained, but one-third of the subjects made gains of 45 IQ
points.
MS. ALLELY summarized that basically the Council wants to
surround families as well as providers with resources, referral,
and parent support. Ms. Allely characterized this as a package
of recommendations because offering screening without an
assessment leaves families in a difficult situation. Likewise,
when a parent learns that his/her child has autism and that
treatment is available, but it's not made available to families
it's similar to telling an individual with diabetes that he/she
can't have insulin. This package of recommendations provides
savings to the state and heartache for the families and
children.
4:06:58 PM
MS. FITZGERALD added that another piece is that [autistic]
children are ostracized in the public due to the lack of
information and education available, which serves to isolate
families. Therefore, early intervention and support impacts the
entire family. She provided a personal anecdote as a parent of
an autistic child.
4:08:54 PM
MS. ALLELY related that some recent studies indicate that on
average it costs approximately $3.2 million over the life of an
autistic child. Therefore, with 60 births of autistic children
in the state, there's a cumulative annual cost of $192 million.
However, intervention provides a savings of $1.6-$2.8 million
per person, which is a substantial savings to the state.
Therefore, [the Council] is requesting a $500,000 increment for
increasing the ability to perform screening and diagnosis. She
reminded the committee that there's only one medical provider in
the state. The clinic [with that medical provider] has found it
difficult to have a psychologist because it's not a service
billable under Medicaid unless that psychologist is working
under a supervising psychiatrist or is practicing as part of a
mental health center. However, those individuals don't
necessarily have the training in diagnosing autism in a two-year
old child. Therefore, this increment would help fund those
essential psychology evaluations to confirm a diagnosis of
autism. This increment would also support family care
coordination and an infrastructure for scheduling, clerical, and
medical records.
4:11:32 PM
MS. ALLELY highlighted that across the country there are no
neurodevelopmental centers or clinics that operate without a
subsidy of some sort. The reason, she related, is because it's
a very time-intensive evaluation that includes review of all of
the child's medical, developmental, and testing records.
Providence Hospital has been supporting and subsidizing the
neurodevelopmental clinic. However, this year Providence
announced that it would either severely cut back the services
provided by the clinic or close it. A number of concerned
individuals pulled together a number of stakeholders and asked
them to reconsider and make changes in the clinic and its
funding mechanisms and billing of Medicaid. The aforementioned
seems to be working, she opined. She related that part of the
plan is to build in a lower level pediatric nurse practitioner
who can perform some of the evaluations and not cost as much as
having a neurodevelopmental pediatrician. An additional medical
provider offers the ability to increase screening and diagnosis.
4:13:37 PM
MS. RYAN corrected her earlier response by saying that the $1
million funding level could provide service to about 150-160
children, depending upon the degree of the disability or delay
of the child.
4:14:21 PM
CHAIR WILSON, in regard to obtaining funding, asked if autistic
children are categorized as mentally ill.
MS. FITZGERALD said that initially autistic children were viewed
as having a mental/psychiatric disorder. However, in the last
20 years that has been reversed and autism is identified as a
neurological, physical, and sensory disease. Still, autistic
individuals can be diagnosed with mental disorders as well. In
further response to Chair Wilson, Ms. Fitzgerald noted that
autistic children have qualified for services under a mental
health diagnosis in order to receive [AMHTA] funds. However,
the concern is in regard to whether the proper treatment is
administered and that the child would then have a
diagnosis/label that would follow him/her to school.
4:17:07 PM
REPRESENTATIVE GARDNER returned to the earlier information that
60 births per year are autistic children and the average cost of
care for such an individual over a lifetime is about $3.2
million. Therefore, the cost to care for an individual who
lives to be 60 years of age would be roughly $58,000 per year.
Since individuals aren't receiving that level of service, she
inquired as to what the $3.2 million consists of.
MS. ALLELY called attention to the spreadsheet in the committee
packet, labeled "Table 20.1 Per Capita Lifetime and Total Annual
Costs of Caring for Individuals with Autism in the U.S. (in 2003
dollars)." The spreadsheet reviews the cost of a low level
disability and high level disability and the services that such
an individual would have over his/her lifetime as well as the
individual and his/her parents' lost productivity. She then
mentioned that committee members could view a short video on the
Internet entitled, "Autism Everyday" in which she was struck
with regard to the financial impact to the families with
autistic members.
4:19:20 PM
CHAIR WILSON requested that copies of the Council's report that
will be completed in June be made available to the committee.
4:19:57 PM
MS. FITZGERALD related her personal experience with her daughter
who had a three-second attention span and for whom she couldn't
find daycare. Therefore, she had to quit her job to care for
her daughter, which meant that the family had to make
sacrifices. Only once the family was fortunate enough to be
selected for a waiver was she able to go to work, she said. One
result of the situation, she related, is that she doesn't have
retirement. The reality is that the financial and emotional
costs to raise a child with significant disabilities are
astronomical. Furthermore, it's difficult for parents to ensure
that a child with significant disabilities is as independent as
possible in the future. Parents are under much pressure to
obtain the services that will make a difference for their child.
4:22:14 PM
CHAIR WILSON inquired as to the divorce rate related to the
stresses caused in families with a child with significant
disabilities.
MS. FITZGERALD offered to find that statistic and provide it to
the committee. She related that with her daughter the family
endured at least three years of sleepless nights in which she
and her husband spelled each other every three hours in order to
ensure that their daughter didn't wake and hurt herself. Many
families experience these issues and the family either becomes
really strong or dissolves quickly.
4:24:24 PM
REPRESENTATIVE FAIRCLOUGH asked if the average life expectancy
of an individual with autism is different than of the typical
individual.
MS. FITZGERALD answered that she didn't believe that at this
point one could predict that children with autism will have a
shorter life expectancy. However, it is known that children
with autism experience more stress, which may or may not cause
other health problems. At this point, Ms. Fitzgerald said she
expected her daughter to have a fairly typical life span.
4:25:24 PM
REPRESENTATIVE FAIRCLOUGH asked if a child with autism who has a
language barrier would have additional health issues that
wouldn't surface until later because of the language problems.
She suggested that the lack of diagnosis [of other health
issues] may place them at a disproportionate disadvantage for
health care.
MS. FITZGERALD related that it isn't uncommon for individuals
with autism to die from an appendicitis because they couldn't
express any symptoms. Furthermore, individuals with autism
typically have a higher tolerance for pain. She noted that
across the spectrum of autism there are children with very
little functional language. She further related the difficulty
in these children accurately relating what they are
experiencing. In response to Chair Wilson, Ms. Fitzgerald
explained that her daughter, as do many others with autism, has
a repertoire of things that mean something to him/her or the
family. As one is around and/or works with an individual with
autism, he/she needs to become familiar with and interpret the
repertoire of things the autistic individual does.
REPRESENTATIVE ROSES referred to the M-CHAT survey that was
mentioned earlier, and asked how it's typically distributed.
MS. ALLELY explained that it really isn't being distributed,
although it's possible that some of the ILPs are using it. Ms.
Allely opined that the M-CHAT isn't incorporated widely into
well-child checkups at this point. Therefore, a strong public
awareness effort would be required to pass the word to
physicians and other medical providers to utilize the M-CHAT.
Furthermore, it would be great if other developmental screening
was performed at the same time.
AN UNIDENTIFIED SPEAKER related that the Southeast Alaska
Regional Health Consortium (SEARHC) is using the M-CHAT.
REPRESENTATIVE ROSES opined that the M-CHAT is a fairly simple
form that would be required to be utilized by those [providing
medical care] to a child under a certain age. He emphasized
that it seems appropriate to require the use of the M-CHAT for
anyone receiving care from Medicare or through any state
agencies, any things over which the state has control over the
requirements for being paid.
4:31:28 PM
MS. ALLELY said that such could be done and hopefully it will.
These recommendations have just come out and the work begins to
get them through. The screening, M-CHAT, shouldn't require a
lot of money to implement, but rather is more of a public
awareness piece, she said. She related that [the Council] has
spoken with the commissioner of DHSS regarding the M-CHAT.
There are also other avenues, such as the "All-Alaska Pediatric
Partnerships of the Alaska Chapter of the American Academy of
Pediatrics" through which this recommendation can be promoted.
Moreover, the recommendation can be promoted through the
Division of Public Health.
4:32:12 PM
CHAIR WILSON commented that public service announcements (PSAs)
could be utilized to get the word out. She expressed hope that
the Council is garnering ideas during its visit to the capital
to continue the process.
4:33:14 PM
REPRESENTATIVE ROSES clarified that his approach would be that
part of the mandatory requirements for [services tied to state
funding] would be the inclusion of the M-CHAT.
4:33:49 PM
REPRESENTATIVE GARDNER remarked that performing a checklist
during well-child visits may not be novel as that seems to
already occur. The question is, she opined, what happens when
the responses aren't standard or what is expected.
Representative Gardner further opined that there's no point in
requiring these screenings if nothing is offered [to serve those
with nonstandard responses].
4:34:33 PM
MS. ALLELY, in response to Chair Wilson, explained that the
child fails [the M-CHAT] when two or more of the six critical
items are failed or any three items are failed.
4:35:24 PM
REPRESENTATIVE FAIRCLOUGH emphasized the importance of taking a
more holistic approach with regard to what physicians ask. She
highlighted that there isn't a medical professional on the
Council to help standardize the [M-CHAT] in order to help
physician's self-identify. The medical community, she said,
must be brought into the fold with regard to developing
solutions for early intervention. Perhaps, the funding should
go toward paying for the involvement of a medical professional.
She provided some ideas of how to acquire a higher preponderance
of evidence when qualifying individuals for the exam.
Representative Fairclough opined that there needs to be review
of an overall means to providing early intervention for various
issues versus taking up each individual issue.
4:41:14 PM
CHAIR WILSON called for the committee members to be more
proactive in regard to recommendations. Early intervention, she
emphasized, is definitely important and needs to be addressed.
4:42:34 PM
REPRESENTATIVE FAIRCLOUGH mentioned the need to provide the
criteria utilized to arrive at the $17.00 [to $1 benefit-cost
ratio] and the need for early intervention.
MS. RYAN indicated that articles in the committee packet provide
that information.
4:45:19 PM
ADJOURNMENT
There being no further business before the committee, the House
Health, Education and Social Services Standing Committee meeting
was adjourned at 4:45:29 PM.
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