ALASKA STATE LEGISLATURE
HOUSE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE
March 3, 2015
3:07 p.m.
MEMBERS PRESENT
Representative Paul Seaton, Chair
Representative Liz Vazquez, Vice Chair
Representative Louise Stutes
Representative David Talerico
Representative Geran Tarr
Representative Adam Wool
MEMBERS ABSENT
Representative Neal Foster
COMMITTEE CALENDAR
PRESENTATION: ALASKA COMMISSION ON AGING
- HEARD
HOUSE BILL NO. 76
"An Act relating to the Governor's Council on Disabilities and
Special Education."
- HEARD & HELD
PREVIOUS COMMITTEE ACTION
BILL: HB 76
SHORT TITLE: GOV COUNCIL ON DISABILITIES/SPECIAL ED
SPONSOR(s): REPRESENTATIVE(s) MILLETT
01/23/15 (H) READ THE FIRST TIME - REFERRALS
01/23/15 (H) HSS
03/03/15 (H) HSS AT 3:00 PM CAPITOL 106
WITNESS REGISTER
DENISE DANIELLO, Executive Director
Alaska Commission on Aging
Division of Senior and Disabilities Services
Department of Health and Social Services (DHSS)
Juneau, Alaska
POSITION STATEMENT: Presented a PowerPoint overview by the
Alaska Commission on Aging.
NANCY BURKE, Senior Program Officer
Alaska Mental Health Trust Authority
Department of Revenue
Anchorage, Alaska
POSITION STATEMENT: Testified during the presentation by the
Alaska Commission on Aging.
GRACE ABBOTT, Staff
Representative Charisse Millett
Alaska State Legislature
Juneau, Alaska
POSITION STATEMENT: Presented HB 76 on behalf of the bill
sponsor, Representative Millett.
PATRICK REINHART, Executive Director
Governor's Council on Disabilities and Special Education
Anchorage, Alaska
POSITION STATEMENT: Testified in support of HB 76.
CHRISTIE REINHARDT
Governor's Council on Disabilities and Special Education
Anchorage, Alaska
POSITION STATEMENT: Testified in support of HB 76.
ACTION NARRATIVE
3:07:08 PM
CHAIR PAUL SEATON called the House Health and Social Services
Standing Committee meeting to order at 3:07 p.m.
Representatives Seaton, Tarr, Talerico, Vazquez, Stutes, and
Wool were present at the call to order.
^Presentation: Alaska Commission on Aging
Presentation: Alaska Commission on Aging
3:07:27 PM
CHAIR SEATON announced that the first order of business would be
a presentation by the Alaska Commission on Aging.
3:08:22 PM
DENISE DANIELLO, Executive Director, Alaska Commission on Aging,
Division of Senior and Disabilities Services, Department of
Health and Social Services (DHSS), directed attention to a
PowerPoint titled "Alaska's Roadmap to Address Alzheimer's
Disease and Related Dementias (ADRD)," and spoke about slide 2,
"Presentation Outline." She stated that ADRD was becoming an
important public health challenge as there was an increase in
the senior population in Alaska, noting that this roadmap was
the culmination of three years of planning efforts.
MS. DANIELLO presented slide 3, "Roadmap Core Team & Agency
Affiliations," which listed the names of the agencies and
individuals who served on the core team, and who were
responsible for the development of the road map. She noted that
it had been a collaborative team effort.
MS. DANIELLO moved on to slide 4, "Alaska's Roadmap to Address
ADRD," and paraphrased from the mission statement, which read:
"To improve public awareness, promote prevention and early
detection, increase access to long-term services and supports,
improve availability of safe, appropriate housing, and increase
caregiver supports for all Alaskans with ADRD." She said that
the cost, currently about $214 billion nationally, was estimated
to "skyrocket" to $1.27 trillion by 2050, as the senior
population continued to boom.
MS. DANIELLO addressed slide 5, "What is Alzheimer's Disease and
Related Dementias (ADRD)?" She explained that dementia was not
a disease, but an umbrella term which described conditions and
diseases resulting in the death of brain cells, which lead to
loss of memory, loss of thinking ability, and loss of the
ability to perform basic activities of daily living. She
relayed that Alzheimer's disease, a slow and progressive
disease, was the most common of the nine different types of
dementia, and was responsible for 60 - 80 percent of dementia.
It can affect each person differently. She listed vascular
dementia from stroke, frontal temporal dementia, and Lewy Body
dementia as other types of dementia. She noted that dementia
was the result of changes in the brain due to the development
and accumulation of plaques which formed on the outside of
neurons. As these changes were responsible for the cut off of
the ability by neurons to communicate or take nutrition, the
brain cells would die. She said that, as initially the disease
started in the inner most area of the brain which was
responsible for memory formation, one of the first symptoms was
short term memory loss. As the disease progressed and moved
into other areas of the brain, there was loss of language,
balance, and higher thinking abilities, as well as changes in
personality and behavior. She declared that Alzheimer's disease
caused significant hardship for both the person who had it, and
for the family. She relayed that advanced stages resulted in a
loss of communication, and a need for help with all functions.
In the end, the person was not able to swallow or walk, and
would eventually die from other causes, often pneumonia, as
infection would set in when a person was unable to move around.
3:15:34 PM
MS. DANIELLO shared slide 6, "Who does Alzheimer's affect?"
which explained who most was at risk for developing Alzheimer's
disease. She stated that, although it was most common for
people over the age of 65, it was not a common characteristic of
aging. She pointed out that there were also diagnoses to
younger people aged 30 - 64. She said that there was no known
cure and no way to slow down its development. She allowed that
there was a growing body of research proclaiming that a healthy
lifestyle, healthy eating, regular exercise, stress reduction,
plenty of sleep, and social engagement, could delay the onset of
symptoms.
MS. DANIELLO pointed to slide 7, "Projected Alaska Senior
Population 2014 - 2042," and reported that the senior population
would more than double over the upcoming 20 years, with Alaska
having the fastest growing senior population. She projected
that the senior population would level off around 2032, at which
time there would be a spike for people aged 85 and older.
MS. DANIELLO addressed slide 8, "Rates of Alzheimer's Increase
with Age," which showed that people over 85 years of age often
had mixed dementia, and that women were more at risk, as they
lived longer than men. She reported that women over 60 years of
age were twice as likely to develop Alzheimer's disease as to
develop breast cancer.
3:18:07 PM
MS. DANIELLO, in response to Representative Wool, clarified that
half of the people with Alzheimer's disease and related dementia
were in that age bracket [85 years and older].
REPRESENTATIVE WOOL asked if it was possible to differentiate
among the various dementias.
MS. DANIELLO replied that each of the nine types of dementia had
its own defining characteristics. She relayed that there were
other risk factors for developing dementia, including cardio
vascular issues, diabetes, and head injury. She said that there
had been an increase in these conditions due to an increase in
the senior population, as well as a corresponding significant
increase in survival.
MS. DANIELLO clarified that there were nine different types of
dementia.
REPRESENTATIVE WOOL asked about the remaining 37 percent of the
population on slide 8.
CHAIR SEATON asked for clarification that the percentages on
slide 8 were for 46 percent of those over 85 years of age had
dementia, or that 46 percent of all dementias over 85 years of
age were Alzheimer's disease.
MS. DANIELLO expressed agreement that the slide projected the
rates for prevalence of Alzheimer's disease in each age group.
3:22:21 PM
MS. DANIELLO moved on to slide 9, "Alaska Alzheimer's Disease
Prevalence, Ages 65+, 2014 - 2025" which reflected the number of
people in Alaska over 65 years of age with Alzheimer's disease.
She noted that currently there were 6,100 people, which would
almost double to an estimated 11,000 in the next ten years, an 8
percent annual increase. She noted that this did not include
related dementia, or early onset Alzheimer's which affected
people 30 - 64 years of age. She estimated that 8,000 Alaskans
had Alzheimer's disease and related dementias.
REPRESENTATIVE STUTES asked if the doubling of Alzheimer's in
the upcoming ten years was related to the aging population.
MS. DANIELLO expressed agreement that the aging of the
population greatly contributed, and, in addition, there was a
relationship with head injuries, diabetes, depression, and
chronic health conditions. She observed that this was a
conservative estimate for Alzheimer's disease and related
dementias. She opined that, as Alaska had the fastest growing
senior population 65 years of age and older, it could be a
leading state for a population of older people with Alzheimer's
disease and related dementias. She noted that, in Alaska, about
one third of those with Alzheimer's disease and related
dementias lived by themselves.
MS. DANIELLO presented the chart on slide 10, which reflected
the death rates in Alaska over the past ten years. She relayed
that there had been an increase in the mortality rate for
Alzheimer's disease, basically due to the increase in the senior
population, although there was a decrease in mortality related
to cancer, heart disease, and stroke.
REPRESENTATIVE TARR asked about the actual health problems
attributed as the cause of death, in conjunction with
Alzheimer's.
MS. DANIELLO said that the cause of death could be related to a
variety of health problems, although it was most often
attributed to pneumonia.
MS. DANIELLO shared slides 11 and 12, "Needs Assessment: Family
Caregiver Community Forums," which had been held in seven
locations across the state, with 161 people in attendance. She
reported that a lot had been learned from the participants,
especially that there was a general lack of public awareness and
a misunderstanding about Alzheimer's disease that often lead to
stigma, embarrassment and denial for the condition. Although
there was not a treatment or a cure, services did help. There
were reports from the family caregivers about inadequate
services, especially in the rural areas, as well as declared
needs for specialized services. She stated that people with
cognitive impairment often had functional limitations and often
needed family care givers, although the care givers had shared
that it was stressful, as they lacked the training. She spoke
about the need for safe and appropriate housing, especially for
assisted living homes. She reminded the committee that the
Pioneer Homes had very long wait lists, and that there were not
very many licensed facility options for dementia and other
challenging behaviors. She mentioned the concerns of safety for
those with Alzheimer's disease who had a tendency to wander into
life threatening situations.
3:29:38 PM
MS. DANIELLO moved on to slides 13 and 14, "Needs Assessment:
Family Caregiver Survey," and reported that mostly women
responded to the survey, half had college educations, and 70
percent were in a long term relationship. She noted that they
were "well-seasoned care givers" and had each provided care for
about four years. The respondents said that the most difficult
challenge for them was stress, which often lead to depression,
which Ms. Daniello said was consistent with the national
findings. She reported that almost one-third of the care giver
respondents said that Adult Day Care was the most important
support service, followed by transportation, support groups,
personal care assistants, and respite.
MS. DANIELLO explained slides 15 and 16, "Needs Assessment:
Behavior Risk Factor Surveillance Survey (BRFSS) & Perceived
Cognitive Impairment," a graph which showed that at later ages,
beyond 70 years of age, the percentage of the population with
perceived cognitive impairment increased. The definition for
perceived cognitive impairment was memory loss progressively
getting worse. She said that it helped to better understand the
relationship between memory loss and how it affected people's
daily lives. She noted that, across all age groups, about 9
percent had perceived cognitive impairment, which included brain
injury. She reported that people with perceived cognitive
impairment had an increased likelihood for smoking, depression,
and cardio vascular health issues.
MS. DANIELLO moved on to slide 17, "Perceived Cognitive
Impairment & Daily Life," and emphasized that it did affect
people's daily lives and their ability to work, engage in social
activities, and perform household chores, and it also increased
their mental distress.
MS. DANIELLO directed attention to slide 18, "Alzheimer's
Disease & Related Dementia Prevalence within the State's Long
Term Services & Supports." She stated that the most prevalent
services used included the Pioneer Homes, Adult Day services,
and the National Family Caregiver grant program administered by
the Division of Senior and Disabilities Services which provided
respite for family caregivers.
REPRESENTATIVE TARR asked about the actual amount of unmet need
beyond the facilities that offered these services.
MS. DANIELLO replied that this was a current unknown and she
opined that it would be reviewed in the future. She offered her
belief that the Adult Day Care had served 416 seniors statewide
during the last fiscal year, of which 66 percent had Alzheimer's
disease and related dementia.
3:35:07 PM
REPRESENTATIVE VAZQUEZ asked about the number in Anchorage [of
Adult Day care centers].
MS. DANIELLO said that she would return with that information.
REPRESENTATIVE VAZQUEZ asked about the number of participants
and the extent of the waiting list for those centers.
REPRESENTATIVE TARR, noting that there was currently an unmet
need, asked how was it possible for providers and programs to
transition to get ahead as the projection was for an even
greater need in the near future.
MS. DANIELLO expressed her agreement. She reported that
nationally, people with Alzheimer's disease and related dementia
were about 18 times more at risk for being in a nursing home.
She pointed out that the more people could be served with less
costly care, for example, the home and community based services,
the longer the state services could serve people, slide 19,
"State Program Average Annual Cost per Recipient." She noted
that the graph showed the average costs for each service, which
included the senior grant programs that supplied these essential
core services, Medicaid personal care assistance and Medicaid
waivers, Pioneer Homes, and skilled nursing care.
MS. DANIELLO moved on to slide 20, "Alaska's Roadmap to Address
Alzheimer's Disease and Related Dementia (ADRD)" and declared
that this was important because it was the first ever statewide
planning process to address the needs of people with Alzheimer's
disease and related dementia. She declared this to be a growing
population of vulnerable people that would increase the cost of
care in Alaska. She stated that, as there was not any cure, the
aim was to increase public awareness, to understand the current
impact in Alaska, and to have a set of goals, recommendations,
and performance measures to address this condition in a
comprehensive way.
3:39:34 PM
NANCY BURKE, Senior Program Officer, Alaska Mental Health Trust
Authority, Department of Revenue, referred to the six goals on
slide 21, "Roadmap Goals," which had been compiled by the
aforementioned stakeholders from the many options. She listed
these to include public awareness for prevention and promotion
for a healthier lifestyle through diet, exercise, and attention
to sleep. She spoke about research for northern climates and
the use of Vitamin D. She listed the remaining goals: to
improve access to affordable housing, services, and supports for
individuals with ADRD at all stages of the disease and to
provide in-home supports to lower the cost to the state; to
optimize the quality, safety, and efficiency of services to
people with ADRD, and to develop more specific technical care;
to develop a long term care workforce trained in dementia care;
to improve quality of life for family and other informal
caregivers; and to increase monitoring and research into ADRD
prevalence, cost of care, prevention, and treatment.
3:42:06 PM
MS. BURKE addressed slide 22, "Seven Prioritized Strategies,"
and directed attention to the fact that the partnership had
resulted in each department taking the lead for a priority,
including the Alaska Mental Health Trust Authority assisting
plans through state Medicaid plan services, the Long Term Care
Ombudsman looking at improved regulations for assisted living
homes and other residential settings, and AARP reviewing
training to caregivers to reduce stress.
MS. BURKE reviewed slide 23, "Goal 2.1.1 Medicaid Reform:
1915(i) and 1915(k) Options." She said that this was an example
of how the Alaska Mental Health Trust Authority was helping the
boards. She pointed out that currently there were projects
looking at ways to better use the 1915(i) or 1915(k) options.
She noted that a significant aspect to these options was that it
allowed them to bring the services closer to the in-home support
services. She reported that the existing waiver programs were
not able to serve individuals with Alzheimer's disease or
related dementia until they were physically unable to take care
of themselves. She stated that both the 1915(i) and 1915(k)
options moved it closer to the home, and allowed services to be
received before the disease impacted their physical abilities.
It also provided access to greater federal match, while bringing
us closer to compliance with some of the federal requirements
regarding conflict-free case management and the rules
determining where services needed to be provided.
MS. BURKE introduced slide 24 "Next Steps," and explained that
the Roadmap was viewed as a living document, and that each of
the partners facilitating these strategies would meet regularly
to move it forward. She said that this was a critical time, as
things were changing in the system, and there could be effective
changes to the services for those with Alzheimer's disease.
3:45:52 PM
CHAIR SEATON referenced the first of the seven prioritized
strategies [slide 22], "educate Alaskans about prevention," and
stated that the House Health and Social Services Standing
Committee had worked on looking at causes and prevention. He
said that the message from the commission seemed to be that
there were no cures or preventions [for ADRD], but that stress
was related to Alzheimer's disease. He pointed out that the
committee had submitted recent articles that Vitamin D could
lower this risk by half, as well as lowering the speed of its
development by half. He referenced other studies about the
reabsorption of beta amyloid plaques with treatment of Vitamin D
and a systematic review that showed a higher proportion of
people with lower Vitamin D levels developed ADRD. He
questioned why there was nothing in the presentation regarding
these prevention means. He asked to review the scientifically
based studies for stress being a cause of ADRD. He wondered
about the mechanisms for choosing what to attribute to ADRD,
while other scientific based studies were not included.
MS. DANIELLO replied that the commission had previously
conducted a "healthy body, healthy brain campaign" which had
focused on the importance of a healthy lifestyle to reduce risk
for ADRD, as well as for brain health. She stated that there
was a lot of research on the benefits of a healthy lifestyle
with good nutrition, exercise, and regular mental engagement,
and she offered her belief that it was necessary to encourage
regular visits to the doctor, have bloodwork done, and have the
proper nutrients, including Vitamin D. She stated that it was
important to look at holistic health.
MS. BURKE acknowledged that Chair Seaton offered a fair
critique, reporting that Alaska Mental Health Trust was looking
at more ways to work in prevention. She shared that there was
currently more focus on who was already in the system, and that
there should be more attention paid to the science and the
research available to help with prevention.
CHAIR SEATON expressed his concern that this presentation was
speaking in broad sweeping generalities for being healthy, even
though there were scientific studies showing direct
relationships which were being ignored. He declared that the
wrong message was being sent, as the statement to have a healthy
lifestyle was too broad and was not creating any action. He
encouraged the commission and the Alaska Mental Health Trust to
support justifiable scientific options that were also cheap. He
referenced the aforementioned studies that lowered the risk for
ADRD. He expressed his support for prevention of ADRD.
HB 76-GOV COUNCIL ON DISABILITIES/SPECIAL ED
3:53:55 PM
CHAIR SEATON announced that the next order of business would be
HOUSE BILL NO. 76, "An Act relating to the Governor's Council on
Disabilities and Special Education."
3:54:31 PM
GRACE ABBOTT, Staff, Representative Charisse Millett, Alaska
State Legislature, explained that proposed HB 76 removed the
word "gifted" from the enabling statute for the Governor's
Council on Disabilities and Special Education. She paraphrased
from the sponsor statement, which read:
The mission of the Governor's Council on Disabilities
and Special Education is to, "[create] change that
improves the lives of Alaskans with disabilities."
Since 1978, the Council has provided a constructive
process that has connected the public with
policymakers to ensure the thoughtful development of
an efficient and seamless service delivery system that
meets the needs of individuals with disabilities
across their life spans.
However, within their enabling statutes, the State of
Alaska also included "gifted" persons among the
individuals that the Council need work for and
support. The Council believes the term "gifted" to be
confusing and ill-fitting within the scope of their
aims and objectives. Furthermore, they believe
"gifted" should be removed for the following reasons:
Exceptionality is not a disability that entitles
students to special education. Gifted education is a
regular education program over which the council has
no oversight.
Gifted children are not eligible for additional
services under the Individuals with Disabilities
Education Act (IDEA) or the Americans with
Disabilities Act (ADA), policies whose adherence is
required per the Council's responsibilities.
Neither federal nor state law provide for special
employment benefits, or special avenues through which
to advocate for employment for those classified as
gifted.
The Governor's Council works tirelessly to advocate
for and access housing, employment, independent
living, health, transportation and community inclusion
for Alaskans with disabilities. Removing the word
"gifted" from their enabling statutes allows Alaska
law to be updated with the most accurate
representation of the mission and work of the Council,
as well as provide future Council membership with a
clear roadmap for success.
3:56:26 PM
CHAIR SEATON asked for clarification, page 2, line 14, that
changing the citation was updating the reference in the federal
registry.
MS. ABBOTT expressed her agreement, noting that the policy was
the same at the federal level.
3:57:11 PM
[Chair Seaton opened public testimony]
PATRICK REINHART, Executive Director, Governor's Council on
Disabilities and Special Education, reiterated that the proposed
bill was "cleaning up our mission versus what's in our statute,
so that we don't get confusion on the public." He stated that
this had been on the agenda to fix for quite a while.
3:58:50 PM
CHRISTIE REINHARDT, Governor's Council on Disabilities and
Special Education, said that she was staff for the council,
specifically for the Special Education Advisory Panel. She
reported that one council responsibility was to the Individuals
with Disabilities Education Act (IDEA) stakeholder group, which
oversees and advises special education. She pointed out that
the Special Education Advisory Panel was federally mandated,
although Alaska was the only state where this panel resided with
the Council on Developmental Disabilities. She said that the
panel advised and administered special education programs
statewide. She pointed to a conflict, noting that in 2002 there
had been regulatory changes made to state education regulations
in response to statutory changes which had removed gifted and
talented education from special education and related services.
She reported that gifted and talented exceptionality was no
longer considered a disability program. There were now two
entirely separate programs. One of which, the special education
program, had very complicated, mandated federal and state
statutes, regulations, policies, and procedures; whereas, the
gifted and talented program was primarily developed and
administered by the local school district or education agency.
She noted that these programs were also funded differently.
While there were some individuals with a disability who were
also gifted and talented, there was very little overlap between
the two programs. She pointed out that, as there was very
little state oversight for the gifted and talented program,
there was often confusion from the parents with concerns for the
quality of the school districts' gifted and talented education
programs. She said there was not a gifted and talented
education program advisory committee and no specified mandated
funding. She expressed an understanding for the concerns of the
parents for their children's education, but this did not fall
within the purview of the council to effectively advise,
monitor, or advocate.
CHAIR SEATON asked about whether it was an efficient process for
the Governor's Council on Disabilities and Special Education to
be the funding conduit.
MS. REINHARDT replied that this was a fantastic partnership, as
they were able to work closely with the early intervention
program, as well as some of the other programs at the council
which looked across the life span of support for individuals
with a disability. She pointed out that the kids in school
would be transitioning into the workforce, and as Alaska was
small enough, the program work could be through one centralized
agency. She noted that the Special Education Advisory Panel met
once each month, even though it was only federally required to
meet quarterly, and that the panel was a very active working
group with a large number of committed individuals invested in
quality special education services in Alaska.
REPRESENTATIVE WOOL asked if one of the purposes for the change
to remove gifted was to relieve responsibility by the council to
the parents of gifted children.
MS. REINHARDT replied that a requirement for gifted and talented
programs was for the local education agency to have a review
plan, which was administered by the local school board, as
opposed to being overseen by the state. She reported that the
council worked at a state policy level, and not at the local
level. She shared another difference that special education
funding was federal and state match, whereas there was not any
designated funding for gifted and talented education. She
stated that local school districts were able to access gifted
and talented funding through the AS 5(d)(6) funds. She declared
that the spending was determined at the local level.
REPRESENTATIVE VAZQUEZ asked for the total budget for the
council.
MR. REINHART replied that the council budget was a bit less than
$2.1 million, and its responsibility to the special education
advisory panel was a pass through amount from the federal
government to the Alaska Department of Education and Early
Development. He offered his belief that this amount was about
$170,000. He explained that the council was multi-level,
combining many different responsibilities, including the special
education advisory panel.
REPRESENTATIVE VAZQUEZ asked how much of the budget was from
general funds.
MR. REINHART stated that there were not any general funds among
the ten funding sources in the council budget, which included
Alaska Mental Health Trust Authority funding and pass through
funding from the federal government.
4:07:45 PM
CHAIR SEATON closed public testimony.
[HB 76 was held over.]
4:08:11 PM
ADJOURNMENT
There being no further business before the committee, the House
Health and Social Services Standing Committee meeting was
adjourned at 4:08 p.m.