Legislature(2007 - 2008)BUTROVICH 205
02/05/2007 01:30 PM Senate HEALTH, EDUCATION & SOCIAL SERVICES
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| Governor's Council on Disabilities and Special Education: Promising Practices in Autism and Early Intervention Service | |
| Adjourn |
* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
+ teleconferenced
= bill was previously heard/scheduled
ALASKA STATE LEGISLATURE
SENATE HEALTH, EDUCATION AND SOCIAL SERVICES STANDING COMMITTEE
February 5, 2007
1:31 p.m.
MEMBERS PRESENT
Senator Bettye Davis, Chair
Senator Joe Thomas
Senator John Cowdery
Senator Kim Elton
Senator Fred Dyson
MEMBERS ABSENT
All members present
COMMITTEE CALENDAR
Overview: Promising Practices in Autism and Early Intervention
Service
PREVIOUS COMMITTEE ACTION
No previous action to consider
WITNESS REGISTER
Millie Ryan, Executive Director
Governor's Council on Disabilities
and Special Education
Anchorage, AK
POSITION STATEMENT: Presented overview
Kathy Allely, Health and Social Services Planner III
Governor's Council on Disabilities
and Special Education
Anchorage, AK
POSITION STATEMENT: Presented overview
ACTION NARRATIVE
CHAIR BETTYE DAVIS called the Senate Health, Education and
Social Services Standing Committee meeting to order at 1:31:42
PM. Present at the call to order were Senators Thomas, Cowdery,
Elton, Dyson, and Chair Davis.
^Governor's council on disabilities and special education
^GOVERNOR'S COUNCIL ON DISABILITIES AND SPECIAL EDUCATION:
PROMISING PRACTICES IN AUTISM AND EARLY INTERVENTION SERVICE
CHAIR DAVIS announced that the committee would be having an
overview from the Governor's Council on Disabilities and Special
Education on its Early Intervention service, presented by Millie
Ryan, the council's Executive Director, and Kathy Allely, Health
and Social Services Planner III for the council.
MILLIE RYAN, Executive Director, Governor's Council on
Disabilities and Special Education, explained that the council
fulfills several roles: advising the state government on issues
pertaining to developmental disabilities and special education,
streamlining and increasing the capacity of disability services,
and advocating for change in policies pertaining to such
services. The board is also a beneficiary of the Alaska Mental
Health Trust Authority (AMHTA). Ms. Ryan pointed out that Alaska
is the only state where all of these responsibilities have been
combined into one council. The council is comprised of 28
members appointed by the governor, 60 percent of which are
either individuals with developmental disabilities or family
members of such. The council does not receive funding from the
state, but rather directly from the federal government, the
AMHTA, and federal grants.
1:37:03 PM
MS. RYAN explained that the council does not provide direct
services. One of the areas in which is most interested is early
intervention, which has been shown to be important to improving
the later quality of life for disabled children and prevent
lasting harm. The window of opportunity for effective early
intervention is in the first three years of life. Studies have
shown that people who received early intervention at a young age
were, at 40 years of age, earning more money and were less
likely to be involved in the criminal justice system than those
who didn't receive early intervention.
1:39:18 PM
SENATOR COWDERY asked if there was a hereditary factor in such
disabilities.
1:39:45 PM
MS. RYAN replied that early intervention also works with the
parents of qualified children to teach them life skills.
Children with FAS certainly are the product of a drinking
mother. There are certain tests that can be done to examine the
parents' genetics.
1:40:53 PM
KATHY ALLELY added that there are often unknown reasons for
disabilities.
MS. RYAN said that it is certain that earlier intervention with
the disabled child is much less costly than dealing with later
consequences.
She explained that 1-2 percent of infants have a diagnosable
disabling condition at birth, like Down's syndrome or cerebral
palsy. In the next few years additional problems can become
evident. By pre-school, language, learning, and behavioral
problems manifest. By public school age, 10-12 percent of
children have some degree of disability. Some of those children
could have been diagnosed and treated prior to entering public
school. Available tools could be used more effectively with
additional funding. By the time a disabled child reaches the age
of 40, for every $1 invested in treatment there was a $17 return
in terms of avoided costs or earned money and property of the
individual.
1:44:36 PM
SENATOR COWDERY asked for an example of medical and non-medical
costs associated with treating a disabled child.
MS. ALLELY replied that physician and hospital visits were
different from therapies and education.
1:46:21 PM
SENATOR DYSON asked if all of the disabled children who
comprised the 10-12 percent figure quoted earlier by Ms. Ryan
required special accommodation in school.
MS. RYAN replied that in most cases, additional care was
necessary. Children could be enrolled in special education
classes or have an individualized education plan, or they could
just need the teacher or administrators to be aware of their
disability.
1:47:50 PM
SENATOR DYSON asked for clarification on the number of special
education students in the state.
MS. RYAN replied that there are 18,000 such students in the
state, from ages 3-21. Some of these children may be
declassified later on if they are properly accommodated at an
early age.
1:48:40 PM
MS. RYAN continued to explain that in fiscal year 2006, the
council served 1,800 children at an average cost of $5,500
apiece. There are 17 regional grantees that provide services as
well as programs run through the Statewide Consultation for
Children with Hearing and Vision Disabilities, an Infant
Learning Program.
1:49:19 PM
SENATOR DYSON asked for clarification on the amount of money
spent on the 1,800 children served, and if $5,500 was the total
amount.
1:49:49 PM
MS. RYAN replied that 1,800 children were served at an average
of $5,500 apiece.
SENATOR DYSON asked if that amount included all services or just
the services provided by the board.
MS. RYAN replied that the latter was correct.
SENATOR DYSON said that he was told that each FAS child cost $1
million in treatment by the age of 18.
1:50:43 PM
MS. RYAN replied that the $5,500 figure represented only the
early intervention costs, which might be effective in preventing
such later costs.
1:51:06 PM
MS. RYAN said that to be eligible for an early intervention
program, a child must have a diagnosed condition leading to
significant delays, or a 50 percent or greater delay in one area
of development. Children with a 15-49 percent delay may receive
services as funds allow. Alaska is more restrictive than most
states in terms of services provided. Services must also be
provided for children under the age of three if they have a 25
percent delay in at least two areas of development.
1:52:48 PM
SENATOR ELTON said that he didn't understand the threshold for
intervention, and asked for an explanation of "delays" and who
makes the determinations.
MS. RYAN replied that a diagnosis of a condition would generally
be made by a doctor. Clinical opinions could qualify a child, or
a developmental checklist.
1:53:43 PM
MS. ALLELY added that standardized assessment tools are used to
determine disability in different areas of skill. A 50 percent
delay, for example, would refer to a 12-month-old child who was
at a 6-month-old's level of development.
1:54:31 PM
MS. RYAN said that many children are not identified when the
intervention is most critical and least costly. In the
Matanuska-Susitna School District, 109 children were eligible
for preschool special education but were never enrolled. In some
cases there was insufficient funding, and in others the children
were not recognized as eligible until preschool.
1:55:32 PM
CHAIR DAVIS asked how the eligible children are supposed to be
identified.
MS. RYAN replied that various child-find activities take place,
from health fairs to doctor evaluations and child care programs.
MS. ALLELY added that child-find activities, including free
basic screening, often take places in busy areas like shopping
mall. However, if the child is not severely delayed they may not
be served due to lack of funds.
1:57:20 PM
CHAIR DAVIS asked if there is a variety of children whose needs
are not being met, and what happens to such children once they
are identified.
1:57:39 PM
MS. RYAN replied that these children may be referred to other
programs in the community, but such services may not be
available. The children with less severe disabilities may be
those who would benefit the most from early intervention.
1:58:42 PM
MS. RYAN said that Infant Learning Program (ILP) grants were
reduced 6 percent in the 2006 fiscal year. An increased number
of children have been identified with autism. The Individuals
with Disabilities Education Act (IDEA) was recently revised and
now requires screenings and referrals for children with symptoms
resulting from pre-natal drug exposure. A three-site pilot
program has resulted in 100 referrals and screenings, 60 of
which required a multi-disciplinary evaluation and 17 of which
met eligibility, and an additional 3 cases were eligible but
would only be served on an available-funds basis.
2:00:50 PM
MS. RYAN said that the council is working with the Office of
Children's Services (OCS) on managing the ILP. They are doing
resource mapping of state and federal funds, and are looking at
possible partnerships with different agencies. A cost study
th
will be completed by June 30 looking at service delivery costs
and other sources of funds. The council will compare its
findings with other states' and model alternative financing
systems.
2:02:11 PM
MS. RYAN said the council is looking at ways to maximize
Medicaid funds and utilize private insurance to support early
intervention. The council had two recommendations for improving
early intervention: a $1 million funding increment from the
AMHTA, which the trust supported but which was not included in
the governor's budget, and a legislative task force to study the
feasibility of billing private health insurance.
2:04:19 PM
CHAIR DAVIS asked for clarification on the recommendation from
the AMHTA.
2:04:46 PM
MS. RYAN replied that the recommendation was for the yearly
budget and that the funds were not provided by the AMHTA.
2:05:29 PM
SENATOR ELTON asked if federal government funds were provided
for mandated child screenings.
2:06:03 PM
MS. RYAN replied that there was a small increase in federal
funds but it was insufficient. A partnership with the OCS is
being explored to help fund the screenings and services.
2:07:25 PM
MS. RYAN said that one important topic was autism, which some
people are calling an epidemic. The council convened a
committee on autism in 2005 which created a series of
recommendations.
2:08:05 PM
MS. ALLELY explained that autism is a high-profile disorder. It
is classified as a spectrum disease, ranging from mild to severe
and it affects social skills, communication, play, and behavior.
Peer relationships, spoken language, and gestures are all
affected or non-existent.
She continued to explain that autistic children are often
preoccupied with certain activities or objects. Autism affects
boys four times more often than girls, and while some may
characterize it as an epidemic, the increased numbers have much
to do with better and broader diagnosis and a wider definition
of the condition. Undoubtedly there are unidentified factors
that contribute to rising numbers as well.
2:13:30 PM
MS. ALLELY explained that in the 1970s the incidence of autistic
births was 2 to 5 in every 10,000, and now the incidence is 1
per 166.
2:14:06 PM
SENATOR DYSON asked if the increase in autism occurrence could
be due to improved diagnosis.
MS. ALLELY replied that she thought so, and that the broadening
of the definition did heighten the numbers of affected people.
2:15:46 PM
SENATOR DYSON asked how long ago autism was characterized as a
disorder.
2:16:17 PM
MS. ALLELY replied that she was unsure when the disorder was
determined.
SENATOR DYSON replied that he thought it would have been in the
last 50 or 60 years, and asked if Asperger's syndrome was a mild
form of autism.
MS. ALLELY replied that Asperger's syndrome was a high-
functioning form of autism.
2:17:39 PM
MS. ALLELY said that out of 10,000 births in Alaska, 60 children
could be expected to be autistic. Other autistic children may be
receiving special education services under a different label.
She said that there have been many improvements in autism
services. Fifteen years ago a pediatrician was recruited to
help with diagnosis in Alaska, and a parent navigation program
was launched to help families navigate the system of services.
She added that five years ago a summit was held by a group of
parents of children with autism, which resulted in a resource
center.
2:22:00 PM
MS. ALLELY explained how the council convened a committee to
come up with suggestions for improving services. She would be
presenting the top four priorities. The first priority would be
expanding resource and referral services to make the Early
Intervention program well-funded and independent. The program
will receive $200,000 for 2008 and 2009.
2:24:00 PM
SENATOR COWDERY asked what long-term services AMHTA provides.
2:24:17 PM
MS. RYAN replied that if a child is eligible, they may receive
services from the Division of Senior Services, which could
include living in a group home.
2:25:22 PM
SENATOR COWDERY asked what employment opportunities there might
be for adults or teenagers with autism.
2:25:31 PM
MS. RYAN replied that an autistic person might receive job
training and support.
MS. ALLELY added that AMHTA funding is not available for long-
term support.
2:26:41 PM
MS. ALLELY explained that the second priority would be doing
universal screening for autism in children as young as 16-18
months, helped by a checklist that can be completed by parents.
2:28:53 PM
SENATOR DYSON asked if autism can be somewhat cured or simply
treated.
2:29:34 PM
MS. ALLELY replied that autism is always present, but that with
proper treatment some people function without support or special
education. Some children's autism can even become unnoticeable.
Some medications may aid with related behavioral issues.
2:32:42 PM
MS. ALLELY said that the third recommendation would be an
increased capacity for diagnosis. This would include lab work,
cognitive testing, hearing and eye tests, and evaluations of
motor development.
2:34:20 PM
MS. RYAN said that the final recommendation would be to change
Medicaid to allow for time-limited intensive intervention
services. Such intervention early in the child's life would
allow for major improvement over a lifetime. School districts
are unable to provide such a level of service. A possibility
would be a home and community-based waiver.
2:36:54 PM
MS. RYAN said that evidence-based interventions show that half
of children who receive such treatment go on to function
normally after 2-3 years of treatment. There is an average gain
of 22 IQ points, and one-third of subjects gained 45 IQ points.
2:38:34 PM
SENATOR ELTON asked if such services were easier to implement in
an urban rather than rural environment.
2:38:58 PM
MS. ALLELY replied that that was the case, but early screening
could be done effectively in a rural setting.
2:40:08 PM
CHAIR DAVIS asked which services included in the recommendations
were currently being fulfilled.
2:40:41 PM
MS. ALLELY replied that the Autism Resource Center currently
provides training and information to families, and the services
are good if inadequate. Developmental screening is done broadly,
but not specifically for autism.
2:42:27 PM
MS. RYAN added that she has been talking to Health and Social
Services Commissioner Karleen Jackson about integrating an
autism screening tool into current services.
2:42:52 PM
MS. ALLELY said that a clinic was in place in Anchorage for
comprehensive assessment; Alaska currently has few intensive
treatment models.
MS. RYAN gave an example of one such program that used to exist
in Alaska but was discontinued after the professor who conducted
it retired.
2:44:46 PM
CHAIR DAVIS asked for clarification on the suggestion to amend
the state Medicaid plan.
2:44:58 PM
MS. RYAN replied that there were two options for doing so,
either using a time-limited waiver program for intensive
training, or looking at possible options and flexibility under
the current state Medicaid plan.
2:45:36 PM
CHAIR DAVIS asked which organization or entity would actually
present the recommendations to the legislature or appropriate
destination to receive proper funding.
2:46:05 PM
MS. RYAN replied that it would be the Department of Health and
Social Services.
2:46:49 PM
MS. ALLELY explained that the average lifetime cost of a person
with autism is $3.2 million, and assuming there are 60 autistic
children born per year, that equals $192 million. Three years
of early intervention for those children would cost $10 million
total, but could save the state $1.6 to $2.8 million per person.
She said that her council is advocating a $500,000 increase for
screening and diagnosis funding. There is a need for such a
subsidy for the council's clinic to continue operating.
2:49:30 PM
CHAIR DAVIS asked for the amount of the subsidy currently being
provided by Providence Hospital in Anchorage.
MS. ALLELY replied that the subsidy was between $250,000 and
$350,000 yearly.
2:49:47 PM
CHAIR DAVIS said that she didn't see how the budgetary issues
connected to the Senate Health and Social Services committee in
particular.
2:50:29 PM
MS. RYAN said that the AMHTA recommendation was not included in
the governor's budget, but that all agreed it was needed.
CHAIR DAVIS pointed out that the budget is not controlled solely
by the governor and thus the recommendation was technically
still alive. She said that she appreciated the presentation and
wished she could promise more concrete action.
MS. RYAN offered to supply some packets of information about
studies done on autism services.
2:51:58 PM
SENATOR DYSON said that the committee would be participating in
the Health caucus the following week and invited the presenters
to join the audience at that meeting.
CHAIR DAVIS announced the next week's meeting regarding the
longevity bonus, and, seeing no further business, adjourned the
Senate Health, Education and Social Services Standing Committee
meeting at 2:52:53 PM.
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