Legislature(1995 - 1996)
02/08/1996 03:07 PM House HES
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* first hearing in first committee of referral
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= bill was previously heard/scheduled
+ teleconferenced
= bill was previously heard/scheduled
JOINT HOUSE & SENATE HEATH, EDUCATION AND
SOCIAL SERVICES COMMITTEE
February 8, 1996
3:07 p.m.
HOUSE MEMBERS PRESENT
Representative Cynthia Toohey, Co-Chair
Representative Con Bunde, Co-Chair
Representative Gary Davis
Representative Norman Rokeberg
Representative Tom Brice, via teleconference
HOUSE MEMBERS ABSENT
Representative Caren Robinson
Representative Al Vezey
SENATE MEMBERS PRESENT
Senator Lyda Green, Chairman
Senator Loren Leman, Vice Chairman
Senator Johnny Ellis
SENATE MEMBERS ABSENT
Senator Mike Miller
Senator Judy Salo
COMMITTEE CALENDAR
Presentation of Disability Issues
WITNESS REGISTER
JIM BECK, Chair
Statewide Independent Living Council
P.O. Box 508
Palmer, Alaska 99645
Telephone: (907) 746-0230
POSITION STATEMENT: Gave brief statement and introduced speakers
BETH LaCROSSE, Member
Vocational Rehabilitation Advisory Committee
P.O. Box 8552
Ketchikan, Alaska 99901
Telephone: (907) 247-2020
POSITION STATEMENT: Gave presentation on health care issues
PEGGY BURGIN, Member
Governor's Council for Disabilities & Special Education
1530 West 11th Avenue
Anchorage, Alaska 99501
Telephone: (907) 278-2102
POSITION STATEMENT: Gave presentation on transportation issues
JERIE BEST, Member
State Independent Living Council
Box 426
Soldotna, Alaska 99669
Telephone: (907) 262-7492
POSITION STATEMENT: Gave presentation on transportation issues
MARI JO PARKS, Member
Governor's Council on Disabilities
P.O. Box 1683
Palmer, Alaska 99645
Telephone: (907) 745-4536
POSITION STATEMENT: Gave presentation on employment services
BOB STARBARD
3853 Melrose
Juneau, Alaska 99801
Telephone: (907) 789-5653
POSITION STATEMENT: Gave presentation on employment services
NANCY DODGE
626 Second Avenue, No. 204
Fairbanks, Alaska 997
Telephone: (907) 456-6445
POSITION STATEMENT: Gave presentation on housing and residential
services
LESLIE YAMAMOTO, Member
Governor's Council on Disabilities & Special Education
P.O. Box 83496
Fairbanks, Alaska 99708
Telephone: Not Available
POSITION STATEMENT: Gave presentation on support services
CAROLYN PETER, Member
Alaska Vocational Rehabilitation Advisory Council
108 Stewart Street
Anchorage, Alaska 99508
Telephone: Not Available
POSITION STATEMENT: Gave presentation on support services
ACTION NARRATIVE
TAPE 96-9, SIDE A
Number 001
REPRESENTATIVE CYNTHIA TOOHEY called the meeting of the Joint House
& Senate Health, Education and Social Services Committee to order
at 3:07 p.m. House members present at the call to order were
Representatives Toohey, Bunde and G. Davis. House members absent
were Representatives Brice, Rokeberg, Robinson and Vezey. Senate
members present at the call to order were Senators Green and Ellis.
Senate members absent were Senators Leman, Miller and Salo.
PRESENTATION ON DISABILITY ISSUES
CO-CHAIR TOOHEY announced the calendar for the meeting was a
presentation on disability issues. She asked Jim Beck, Chair of
the Statewide Independent Living Council to come forward and begin
the presentation.
Number 030
JIM BECK, Chair, Statewide Independent Living Council, stated he
was before the committee to introduce representatives of a group of
dedicated Alaskans who volunteer a great deal of their lives to
create an Alaska that values all its citizens, including those with
disabilities. These individuals serve on the State Independent
Living Council, the Governor's Council for Disabilities and Special
Education, the Governor's Committee on Employment of Persons with
Disabilities, the Alaska Vocational Rehabilitation Advisory Council
and the Assistive Technologies of Alaska Advisory Council. Mr.
Beck said they have been participating this week in a historic set
of meetings. They met as five different bodies to look at ways
they could coordinate and collaborate their services, which is
essential in order to provide the most effective services in these
economic times. They have been collaborating on the vision they
all share for Alaska. This vision reveals the potential that we
are all capable of realizing, and building on our core belief in
the value of all citizens. They see an Alaska where citizens with
disabilities can live with dignity in the community of their
choice; where citizens with disabilities receive the services they
need, not in institutions but in neighborhoods where we all live;
where citizens with disabilities benefit from and participate in a
free and appropriate public education system with friends, peers
and neighbors; where citizens with disabilities reap the benefits
and rewards of our educational institutions and other community
services, enter into gainful employment or other significant
activities, and rather than becoming an economic drain, become a
part of local solutions to local problems; where citizens with
disabilities exercise their citizenship, such as in a hearing like
this; where citizens with disabilities, whether they use a
wheelchair, walk with crutches, communicate with sign language,
communicate with a device or technology, read Braille, experience
a mental illness or any other disability, are able to participate
fully, not only in our government, but in every other facet of life
that Alaska offers.
CO-CHAIR TOOHEY noted that Senator Leman arrived at 3:10 p.m.
MR. BECK said big, complicated government programs are not needed
to realize this vision of human potential, but what is needed is
thoughtful investment in sensible programs: Programs that are
coordinated and provided at the most local level, programs that
value families and value the dignity of all Alaskans. Mr. Beck
informed the committee they would be hearing about some of the
specific components of this vision from Alaskans who serve on the
boards and commissions, Alaskans who have a disability or have
spouses, children or friends with disabilities. The components
they will be discussing have been identified by their members as
critical to the ultimate success of their vision. These components
include issues of housing and residential services, transportation
needs and services, employment needs, issues and services, health
care issues, and support services that enable people with
disabilities and their families to access the aforementioned
services.
MR. BECK said with the support of committee members and the
expertise of this group, they feel this vision can be a reality.
He announced the first topic area would be the health care issues.
Number 101
BETH LaCROSSE said she is a member of the Vocational Rehabilitation
Advisory Committee and disabled. The issue of health care of very
important to her personally. Until she was eligible for Medicaid,
she was responsible for all her medical costs which left her in
considerable debt. With the cuts in Medicaid, she is no longer
able to afford dental and optical services. Therefore, they need
fully funded, accessible, comprehensive health care, which is an
essential lifelong need for individuals with disabilities. She
added that fully funded means each individual takes as much
financial responsibility as they are able to; accessible means that
health care services are available regardless of location and are
in compliance with existing legislation; and comprehensive means
interventional prevention services, assisted technology devices and
services, wrap around services and all inclusive of health care
services, as well as proactive and supportive services.
MS. LaCROSSE pointed out that over 62 percent of adult public
assistance recipients experience disabilities. Sixty-three percent
of these people with disabilities are unemployed nationally, and
two-thirds of them desire employment. There have been cuts in
Medicaid funding and in areas of coverage over the last five years,
including cuts in vision, dental, occupational therapy, hearing
aids, signaling devices, speech therapy and others. Co-payments,
which are now required, adversely affect low income individuals and
reduce access to health care services. Personal care assistants
and certified nursing assistants are the lowest paid health care
professionals in the industry today and are in the highest demand.
The Medicaid cuts can result in worsening medical conditions which
in turn will result in high end costs, inappropriate use of
emergency room services, decreased quality of life and reduced
capacity for employment. She commented we now have a crisis-driven
system rather than a proactive, preventative health care system
resulting in increased costs. She noted that institutionalization
costs range from $100,000 to $200,000 per person per year, whereas
home-based costs average $35,000 per person per year. Some parents
are forced to give up parental rights when they place their child
into foster care in order to receive Medicaid benefits until a
Medicaid waiver can be obtained. Health care is a resource; it
should not be a legal problem.
MS. LaCROSSE concluded some of the alternatives and options
available are the use of the long-range planning commission's
recommendations for funding, perhaps raising taxes, raising user
fees, or decreased permanent fund dividends. Another alternative
would be to have a permanent fund dividend medical option, similar
to the college option currently available. Other options are the
use of the permanent fund dividend reserve, streamlining billing
processes for Medicaid waivers, and we must ensure there are no
monetary cuts or reductions in services. Their recommendation is
that Medicaid benefits be reinstated to 1993 levels. The
justification for that is comprehensive coverage saves money by
avoiding catastrophic health care costs and promotes the quality of
life as well as expands employment. Medicaid waivers are allowing
people to live outside nursing homes. Community-based services are
functioning now and saving the state money. Additional money can
be saved by utilizing more innovative service delivery systems.
Flexibility in the Medicaid regulations for training and salary
administration must be allowed. People with disabilities deserve
to be fully integrated and not treated as second-class citizens.
All of us must remember that health care is not welfare. Health
care is about equality and inclusion. In many cases, health care
is a life or death issue, and in every case it is a quality of life
issue. Funding for Medicaid and health care should be considered
an investment in Alaska's future rather than a liability for today.
Number 218
PEGGY BURGIN said she represents all the councils on the
transportation issue. She is a senior citizen who is concerned
about accessible transportation for all Alaskans. Currently, there
is accessible transportation without restrictions in only four
cities statewide.
CO-CHAIR TOOHEY noted that Representative Rokeberg joined the
meeting at 3:20 p.m.
Number 218
JERIE BEST is a member of the Statewide Independent Living Council
and the Transportation Chairperson. She indicated there were a
couple of issues she and Peggy wanted to discuss. First, they are
looking for a resolution so no disabled Alaskan who needs
accessible transportation is excluded. She shared the story of a
relatively new quadriplegic in their area, who is one of those
individuals who falls into the area of exclusions. For example, if
there is an accessible van, he can't ride on it because of age
discrimination; in other words, he's not over the age of 60. This
individual has not only had a traumatic change to his lifestyle,
but is in need of medical care. In order for him to go see his
doctor, he has to make arrangements with the local nursing home and
it costs him $70 round trip for about a six mile trip. She pointed
out there are accessible vans in the area, but if you are not 60-
years-old or married to someone who is 60 years old, you are not
allowed to purchase rides on those vans. Thus, they are asking for
a resolution to preclude the discrimination.
Number 246
MS. BURGIN said that in some communities, one or more local
agencies operate buses or lift vans for transporting elderly people
and people with disabilities. Often the funding for these vehicles
restricts the type of individuals who can ride on them. Poor
coordination among agencies which have lift vans leaves service
gaps where they need not exist. Transportation is a major concern
for them.
Number 253
MS. BEST asked the committee to note that there are two user groups
presenting this issue and commented she is a user because it is
difficult for her to drive a car anymore. They would like the
resolution to remove barriers which prevent joint use of vehicles.
Number 259
MS. BURGIN added they also request the enforcement of existing
anti-discrimination statutes.
Number 261
MS. BEST said they would like incentives to be provided to develop
collaborative van usage agreements.
Number 262
MS. BURGIN added they would also encourage coordination between
state, federal, local agencies and user groups.
Number 263
MS. BEST commented it is a relatively simple process for the
legislature to do by resolution. Additionally, they are
requesting some funding to enhance current transportation services,
because accessible transportation is inadequate for disabled
Alaskans.
Number 268
MS. BURGIN remarked they support the Governor's Council on
Disabilities and Special Education recommendation for a minimum of
$500,000 capital projects which are fully accessible.
Number 270
MS. BEST said as a group, they also support a $1 million allocation
for accessible transportation operating expenses. Vans don't run
without gas, drivers, tires and maintenance.
Number 275
MS. BURGIN said they recommend that all accessible transportation
funding be coordinated and/or administered by the Department of
Transportation and Public Facilities through Bruce Wells, Transit
Coordinator.
Number 280
MS. BEST concluded they endorsed the recommendations of the Alaska
Public Transportation System (APTMS) implementation plan as stated
in Chapter 7. This plan is also an inventory of all accessible
vehicles in the state of Alaska and is available through Bruce
Wells.
Number 284
SENATOR LYDA GREEN asked Ms. Best if she was the woman that Senator
Green had spoken to on teleconference this past summer.
MS. BEST responded yes.
SENATOR GREEN said the work of the committee which was addressing
the very problem that Ms. Best had just talked about is still
ongoing. She thought the committee was meeting in the Mat-Su area
this next week.
MS. BEST said the nice thing about the Mat-Su is they have applied
for a rural agricultural grant which will bring coordinators into
the area to help coordinate the system. Through the efforts of
United Way, it looks like Mat-Su will have a coordinated system.
She commented the same is going on in Kodiak, so some strides are
being made. However, their concern is when a public body uses
public funds to purchase an accessible vehicle and gives it to an
agency that denies everyone else use.
SENATOR GREEN said the funding portion is what really caused the
problem in Soldotna. In other places it looks like there is a
workable solution, which avoids duplication, etc.
MR. BECK stated the next issue to be discussed was employment
services.
Number 310
MARI JO PARKS commented that she represents the joint committees
that met this week.
Number 313
BOB STARBARD attended the joint council meeting as a member of the
general public and got drafted. The issue to be discussed by Mr.
Starbard and Ms. Parks was employment of individuals with
disabilities, or the lack thereof. A person with disabilities
experiences limited employment opportunities due to physical and/or
attitudinal barriers existing in the state. The 1991 Harris Poll
revealed that of the seven million persons receiving social
security insurance (SSI) benefits due to disabilities, 63 percent
wanted a job. These individuals are unemployed or under-employed
not because they don't want to work or because they lack of
abilities to work, but because of the barriers they encounter to
getting employment. This is not only an issue of physical
barriers, it is also an issue of attitudinal barriers in the arena
of equal employment opportunities. While there are some training,
education and tax incentive programs for employers, persons with
disabilities and the general public, people with disabilities do
not pursue employment or educational opportunities because they
continue to be unaware of the existence of those programs or they
fear the loss of a much needed benefit if they pursue them.
Number 338
MS. PARKS said as a high school work study specialist for people
with disabilities, she has the opportunity of working with students
between the ages of 15 - 21. These are students who experience
disabilities and she helps teach them how to work. She sees them
progress from a person who has little to no skills to becoming
independent, self-sufficient people who do need assistance at times
in various ways. It is because of the success she sees, that
causes her to become especially upset when she sees these people go
out of the high school programs and have no job opportunities.
They are on wait-lists and for many of them it's five or more
years. By that time, they've lost many of the skills they learned
in the high school programs. Therefore, some of the councils'
recommendations for this joint committee are: 1) allocate funds to
the Division of Vocational Rehabilitation for a consolidated and
ongoing program to educate and train employers, business owners and
the general public on the issues that affect them and the
employment of persons with disabilities; 2) create some additional
business incentives for businesses who employ persons with
disabilities, for example, a bid preference and legislative
recognition awards; 3) funding to be allocated in the amount of $4
million of the much needed $52 million for FY 97 to remove
identified architectural barriers; and 4) include people who have
disabilities in any plans for economic development, especially in
rural Alaska.
Number 364
MR. BECK announced the next issue to be discussed is housing and
residential services.
Number 367
NANCY DODGE stated their issue is a lack of accessible, affordable
places to live for Alaskans with disabilities. Housing for
Alaskans with disabilities is considered by consumers and advocates
to be the number 1 identified need for people with disabilities.
This information came out of public forums sponsored by the Alaska
Independent Living Council. Many people who experience
disabilities are on wait-lists for community-based residential
services or public housing under Section 8. People with
disabilities need to own affordable housing and need low interest
loans with which to buy housing and that housing must be integrated
into the community. Existing housing opportunities negatively
impact independence, productivity and the integration of
individuals with disabilities. Barriers to owning a house include
the requirement for down payments, the individual's ability to
receive financing with limited credit, and low to no employment.
The homes that families with disabilities have found adequate in
the past may require substantial modification to accommodate family
members with serious disabilities. Often the family member has had
to leave home, especially in rural areas, and travel to larger
population centers to find adequate housing. The Alaska Housing
Finance Corporation (AHFC) Special Needs Advisory Committee is
responsible for identifying and implementing ways to meet the
housing needs of Alaskans with disabilities. She told committee
members that when they confirm appointments to the AHFC, the
disability community would like a consumer to represent them. They
recommend that the AHFC develop new lending programs to allow
individuals who have disabilities to purchase their own homes. The
AHFC and the Alaska Mental Health Trust Authority are also
requesting funds for home modifications. All councils strongly
support this budget request. The legislature has approved a $1.5
million AHFC expenditure to build three group homes for individuals
with disabilities who are leaving the Harborview Developmental
Center. Some people with disabilities need the structure of
teaching family homes which are small community-based group homes
that emphasize social skills development and deemphasize demeaning
characteristics of institutions, as well as prepare individuals for
total independent living choices. As the executive director of an
agency that runs group homes, she is well aware of the fact there
are budget constraints and that funding is drying up. As was
previously mentioned, looking at this from a cost-need basis, the
cost per individual per year is approximately $45,000 for a group
home whereas the cost at Harborview is about $150,000, so there is
a great savings.
Number 398
MS. DODGE presented three recommendations for the legislature: 1)
please support the funding requested in the Governor's budget under
the AHFC and Alaska Mental Health Trust Authority for housing
modifications; 2) when members are confirmed to the AHFC, ensure
that someone recommended by the disability community is appointed
to the corporation so the needs and interests of the disability
community remain a top priority; and 3) continue to fund community-
based teaching family programs rather than institutional
facilities.
Number 412
REPRESENTATIVE TOM BRICE joined the committee via teleconference
from Fairbanks.
Number 428
SENATOR JOHNNY ELLIS asked Ms. Dodge what percentage of the unmet
need is represented by the three group homes for which AHFC is
funding the construction.
MS. DODGE asked Senator Ellis to clarify the question.
SENATOR ELLIS said the group had calculated how much need there is
for specialized housing for Alaskans who experience disabilities
and the point that he was trying to make was that the AHFC's
ongoing efforts really don't come close to meeting the need.
MS. DODGE said that was true. She didn't have the exact numbers,
but said she would be happy to get those for Senator Ellis.
Number 435
CO-CHAIR BUNDE said as he understands it, the $1.5 million takes
care of the Harborview problem, but it does not address other
housing needs.
CO-CHAIR TOOHEY said she was delighted the Harborview problem is
being resolved and that it would be a big asset to Valdez,
Harborview and its residents.
Number 442
MR. BECK stated the next topic is support services for people with
disabilities and families.
Number 449
LESLIE YAMAMOTO said she has been a member of the Governor's
Council on Disabilities & Special Education for six years. She
represents two children with severe disabilities and wanted to
share with committee members how their family has benefitted from
the community-based services they receive. Because of these
community-based services, both of her children have not required
the more expensive alternative, which is institutionalized care.
She briefly described for the committee what supportive services
are available to them. Her family has benefitted a great deal from
the respite care, which is absolutely critical to the preservation
of the family. Primary care givers need a break and respite care
allows that break from the stress of constant care. Respite
diverts individuals from more expensive and unnecessary out-of-home
placements, which takes the individuals away from their family.
The council has identified 170 families for this top priority.
Other supportive services are community-based and there is a wide
array of those available. They are individualized depending on the
needs of the individual and can include family supports, service
coordination, respite care, personal care attendants, residential,
transitional and vocational services, assistive technology, ways to
manage inappropriate behaviors, family training, etc. All of these
individualized services allow for natural support such as friends,
neighbors and family members to provide services in rural and urban
settings. They believe this is a good use of financial resources.
The cost to the state has reduced significantly since
individualized services began. Five years ago, Alaska paid $30,000
per person per year for individualized services; in FY 95, it was
$13,827. The reduction in cost is directly related to the Division
of Mental Health & Developmental Disabilities' policy regarding
providing the services that the individual and family wants and
needs, rather than a prescribed set of services. By contrast,
institutional care at Harborview Developmental Center costs about
$151,000 per person per year. It is clear to see the family
approach is not only cost effective, but it allows us to care for
our loved ones in our community.
MS. YAMAMOTO stated there are 1,948 Alaskans who are unable to
access their communities because they lack these supportive
services. There are 658 Alaskans waiting for developmental
disability services; 610 children between the ages of birth and
three years of age waiting for infant learning programs; 600
requests for American sign language interpreter services were
denied this year; 30 blind Alaskans need services to live in rural
communities; and 50 or more Alaskans want to leave institutions but
they need these supportive services. Ms. Yamamoto stressed that
funding is needed for these community-based services. Individuals
with disabilities need to be able to purchase supportive services
they need in their community.
MS. YAMAMOTO concluded that as citizens of the state of Alaska,
everyone is aware of the condition of the state's finances. As a
parent and on behalf of the community of people with disabilities,
they are asking the legislature not to just cut programs, but to
seriously share the hurt as they consider all the possible ways to
assume financial success for the people of Alaska.
Number 499
CO-CHAIR BUNDE said Ms. Yamamoto had cut right to the heart of the
matter with her closing comments. He mentioned he had earlier
shared with some folks that none of them had started this project
wanting to make the hard decisions they face. He assured the group
that decisions will be made with care and consideration.
Number 508
CAROLYN PETER said she is from Fort Yukon, but currently living in
Anchorage. She became blind four years ago while living in Fort
Yukon and teaching for the University of Alaska Fairbanks at the
extended campus in Fort Yukon. She was able to continue her
teaching because fortunately they teach by audio conference and she
didn't face the difficult task of getting around. At that time,
she started going to the Alaska Center for Blind Adults in
Anchorage during the summer for her training. She is very grateful
for that type of training because it gave her back her life. She
thought it was the end when she went blind; she felt her spirit die
day-by-day as she thought she couldn't do things. She was taught
at the Alaska Center for Blind Adults that she can do most things,
except fly an airplane or drive a car.
MS. PETER said she wanted to share some of her experiences and talk
about how difficult it is when a person with a disability lives in
rural Alaska. She went to the Alaska Center for the Blind for
which she is very grateful, but going back home presented many
difficulties. With her cane travel, she had learned how to follow
curbs, how to cross street lights, how to listen to traffic flow
patterns which were all very important to her because as a blind
person she wants to be able to move from the rural areas to urban
areas. When she got back home, she didn't find any curbs and was
very nearly injured at a construction site that hadn't been
completely surrounded. There is a desperate need for people to
help make that transition back to the rural areas. She commented
it would be nice to have care people and instructors in each
community, but if that's not possible, there is a need for people
to help with the transition. There is also a need for people to
work with families in learning how to handle disabilities.
Number 535
MS. PETER said currently her sighted guide is her 6-year-old
grandson, Zack, who she is raising. She is learning to read
Braille while Zack is learning to read in school. She commented
his reading is progressing nicely because he does a lot of reading
for her.
CO-CHAIR TOOHEY said she is thrilled the groups have joined
together because with that kind of unity, they will be able to come
up with plans that will result in more community involvement, more
church involvement, and more people involvement. She believes that
we are going back to the days when people were a little kinder and
a little more giving. She wished the group good luck in their
endeavor.
Number 558
MR. BECK said he was not aware of another state where all the
disability-related councils have come together seeking ways to
solve problems for Alaskans with disabilities. He thanked the
joint committees for their time and their past commitments to
advancing the rights of persons with disabilities.
CO-CHAIR TOOHEY referred to the recognition of businesses that
employ persons with disabilities and said she thought it was a
wonderful idea. She urged the group to select a business in their
community or district who they feel is qualified for this
recognition and convey that information to their legislator. She
commented it would help the state and the community.
CO-CHAIR BUNDE added that the mechanism is in place currently where
a legislative citation can be done for those businesses that truly
are deserving of recognition, but the group needs to make those
nominations.
MR. BECK said they would be recognizing businesses and employers
throughout the state at the local level as well. He noted that
positions papers were available on all five of the issues that were
presented today.
ADJOURNMENT
CO-CHAIR TOOHEY thanked the group for coming and their testimony.
She adjourned the joint meeting of the House and Senate HESS
Committees at 3:47 p.m.
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