Legislature(2001 - 2002)
03/07/2002 08:07 AM Senate HES
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* first hearing in first committee of referral
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ALASKA STATE LEGISLATURE
SENATE HEALTH, EDUCATION & SOCIAL SERVICES COMMITTEE
March 7, 2002
8:07 a.m.
MEMBERS PRESENT
Senator Lyda Green, Chair
Senator Gary Wilken
Senator Bettye Davis
MEMBERS ABSENT
Senator Loren Leman, Vice Chair
Senator Jerry Ward
OTHER LEGISLATORS PRESENT
Senator Kim Elton
Senator Georgianna Lincoln
Senator Ben Stevens
Representative Ethan Berkowitz
Representative John Davies
Representative Reggie Joule
COMMITTEE CALENDAR
Key Campaign
WITNESS REGISTER
Ms. Maureen McGlone
Anchorage, AK
Ms. Dawn Sadler
Fairbanks, AK
Mr. Ray Nabinger
Eagle River, AK
Ms. Valerie Nabinger
Eagle River, AK
Ms. Marie Simmons
Galena, AK
Ms. Karen Timmins
Eagle River, AK
Ms. Karen Sidell
Bethel, AK
Mr. Bryan Knight
Anchorage, AK
Mr. Steve Lesko
Anchorage, AK
ACTION NARRATIVE
TAPE 02-18, SIDE A
8:07 a.m.
CHAIRWOMAN LYDA GREEN called the Senate Health, Education &
Social Services Committee meeting to order at 8:07 a.m. Present
were Chairwoman Green and Senators Elton and Wilken. Senators
Davis, Lincoln and Stevens and Representatives Berkowitz, Davies
and Joule arrived later.
She announced that the Key Coalition would be making their Key
Campaign presentation to the committee. She asked Ms. Maureen
McGlone from Anchorage to provide testimony.
MS. MAUREEN MCGLONE said she was a member of the Key Coalition.
She thanked the committee for inviting the Key Coalition to meet
th
with them. She said this was the 15 Key Campaign and explained
that it began in 1988 as an effort to work with the legislature
to eliminate the waitlist for community supports for people with
developmental disabilities. The Key Coalition was made up of
parents, service providers, adults and children with
developmental disabilities who worked as a united team to
advocate for critically needed supports for people with
developmental disabilities.
She said the Key Campaign came to Juneau to advocate for expanded
services. When they arrived they learned more about the fiscal
issues plaguing the legislature and that one of the proposed
solutions to the looming fiscal gap was to make budget cuts. She
said budget cuts could mean service reductions in their programs.
She said the Key Coalition realized that under the current
conditions increases in funding were not likely.
MS. MCGLONE said the Key Coalition still needed to remind the
legislature of all that they had helped create over the years.
She said reductions to the waitlist and increases in community-
based services for people with developmental disabilities helped
increase self-sufficiency and preserve and strengthen families.
She asked the legislature to continue to ensure that community
services for people with developmental disabilities would not be
reduced. She said the supports and services had tremendous
personal and collective value and the prospect of losing them or
seeing them reduced was frightening. She said the service system
was already sparse and Alaska met some fundamental needs with
fewer resources than many other states. She said that
effectiveness came at a price and budget cuts would mean lost
services and more reductions to already minimal services.
MS. MCGLONE noted that these issues are of such concern that
people who would ordinarily prefer to protect their privacy and
guard their pride chose to come tell the legislature how the
services helped in their lives. They came to share their private
lives to remind the legislature of why community services for
people with developmental disabilities needed to be protected.
They represent all the families who shared similar needs and
circumstances.
CHAIRWOMAN GREEN thanked her. She asked Ms. Dawn Sadler from
Fairbanks to provide testimony.
MS. DAWN SADLER showed the committee a picture of her daughter
Sabrina who was born with a rare genetic disorder called Cri-du-
Chat. Sabrina would be five years old in May. The doctors
originally said that Sabrina would need to be institutionalized,
would never walk, would never speak and would never really be a
part of the family. She said that was far from the truth because
of the advances made in the medical field and the system in the
state and the country. Sabrina was walking and signing and had
some vocalization. She is called "Miss Sunshine" at school
because she has a smile that lights up a room. She said that was
most days and really depended on Sabrina's mood. She told members
that Sabrina was her little angel.
MS. SADLER explained that Sabrina had a lot of behavioral
characteristics that were common for children with disabilities
and could be very hard on a family. She thanked God that they
didn't have to put her in an institution and there were no
institutions in Alaska. They were able to be at home with Sabrina
and be a semi-normal family because of respite care. She received
40 hours of relief a month from qualified personnel that had been
trained and had a heart for people with disabilities, which was
very important because they could be very trying. Some people
with disabilities had severe medical needs as well and needed
trained people to take care of them. The relief allowed her to
go to basketball games with her other children or have a date
with her husband, which was important because a lot of divorces
happened when a disabled child came into a family.
MS. SADLER said her household was very happy and Sabrina was
coming up in the world but they had a lot of things they still
needed to face. They have lived in Alaska all of their lives and
don't plan to go anywhere. She loves Alaska and has a lot of
faith in the state as it has always been a "people" state and
everybody has done a great job helping her. She had a lot of
faith that there would be new programs for Sabrina as she grew
up.
She said children with disabilities grow up slower but they still
have a lot of the same hopes and dreams that everybody else did.
She said perhaps before Sabrina was born, they had hoped for
Harvard, but now they hoped that she could go out into the
community and be able to find a job she could do. She said
Sabrina probably wouldn't be able to function at Safeway or
McDonalds and would need some sort of community service special
developmental job. She said some of the projects already out
there would make Sabrina very happy. She said Sabrina would be
able to get a paycheck and would be very proud of that. She said
they want that for Sabrina as parents and want her to be in an
assisted living program in a nice place.
MS. SADLER acknowledged that the legislature has some very tough
issues to face. She didn't want the legislators' job any more
than they wanted hers. She said there were times that she felt
overwhelmed by everything that was going on and was sure the
legislators felt the same way. She hoped that the legislature
would do the right thing and thanked committee members for their
time and for the help they had already given.
SENATOR WILKEN assured Ms. Sadler that his job was much easier
than hers, knowing all that she went through and of her advocacy
efforts in the Fairbanks area.
CHAIRWOMAN GREEN thanked Ms. Sadler. She asked Ray and Valerie
Nabinger from Eagle River to provide testimony.
MR. RAY NABINGER thanked the committee for taking the time to
meet with the Key Campaign. He showed the committee pictures of
their son Jarod [ph.], a 17 year old and he was blind and deaf.
He said Jarod came off the waitlist the previous May, which was
very encouraging and a shot in the arm for them.
MR. NABINGER said deaf-blind people need a consistent environment
and stimulating activities that allow them to expand their
language, mobility and world concept. He said Jarod's world, and
theirs in turn, was very confusing, frustrating and isolated. He
said trying to meet all of Jarod's needs on their own was very
exhausting.
He said they receive modest funding and are able to maintain an
environment and allow Jarod to get out into the community. The
funding expanded Jarod's opportunities and world and gave them a
chance to participate in the community. He said it had taken
them from despair and lack of hope to hope and from isolation to
participating in the community. He said it was a joy to watch
Jarod in the community because he was "a delightful little
character." They are able to volunteer and help others as well.
He asked the legislators to consider this funding as an
investment in the citizens and the community. He said cutting
the funds could easily mean community and family disintegration,
which could ultimately cost considerably more.
SENATOR LINCOLN asked what the impact of coming off the waitlist
had been. She heard so much about the waitlist but the family
had functioned for 17 years in some manner. She thought it was
really important to hear what coming off the waitlist really
meant.
MS. VALERIE NABINGER said she used to spend all of her time and
energy on basic daily care needs because it was time-consuming
getting through a normal day when a person depended on you for
everything. She was isolated and her world was very small. She
said getting off the waitlist allowed them to have the support
they needed from the community through agencies like FOCUS, which
sent providers to help with the daily care needs so they were
free to do some fun things with Jarod. She had more time and
energy to participate in the community and help other people.
She said the only way she could explain it was that it had opened
up their world and instead of being in a tunnel, they were out
there.
CHAIRWOMAN GREEN thanked them. She asked Ms. Marie Simmons from
Galena to provide testimony.
MS. MARIE SIMMONS said she was on the Governor's Council on
Disabilities & Special Education. Her daughter Tisha [ph.] is a
beautiful young lady who would be 25 years old on Easter Sunday.
Tisha became a quadriplegic when she was in a car accident when
she was 15 years old. Tisha was a typical 15-year-old at the
time of the accident; she enjoyed figure skating, downhill skiing
and playing basketball. Tisha's life was yanked out from under
her the day she got in the accident. She said it was a very
traumatic change for the family.
She said Tisha was in a children's hospital in Seattle for seven
months and was going downhill. She said they wanted Tisha to be
brought back to Fairbanks or Anchorage so that she could be
around her friends and family but they were told that there were
no facilities in Fairbanks or Anchorage able to treat Tisha. She
wrote to her Congressmen and Senator Ted Stevens wrote letters to
the agencies in Fairbanks to encourage them to make sure that
Tisha came back to Fairbanks to get the services she needed. She
said a team, including occupational therapists, physical
therapists, respiratory therapists, doctors, nurses, personal
care attendants and other people from different state and tribal
agencies, went to Seattle to learn how to take care of Tisha.
MS. SIMMONS said the first 18 months were a constant battle. Her
focus was primarily on taking care of Tisha so that she could
survive as Tisha fought for her life every day. She said Tisha
had to be turned and suctioned every two hours. She said Tisha
spent about three weeks of every month in the hospital with a
collapsed lung, pneumonia, abnormal calcium levels and numerous
urinary tract infections.
She had to quit working to take care of Tisha, which meant she
had to depend on the welfare system. She had always been very
proud and thought it was the end of the world to have to go on
welfare but she was able to be home and take care of Tisha
because of the welfare system. She said their basic needs were
met. She had to rely on food boxes during the last week of the
month. She received $844 per month to pay rent and buy food to
meet their very basic survival needs. She said a cut in the
welfare system would be devastating to a lot of families.
She said Tisha was on the waitlist for three and a half years
before they got services. She said they were able to get
personal care attendants, respite and many different agencies
involved in helping them take care of Tisha. She said many
families had been on the waitlist a lot longer than they had.
She encouraged the legislature not to cut back on services
because they were desperately needed.
MS. SIMMONS said Tisha was going to finish her master's degree in
psychology in December and was working full time as a director
for a children's mental health services provider. She said Tisha
is a contributing member of the Fairbanks community. She thanked
the committee for listening to Tisha's story. She was very proud
of her daughter and that she had been through a long tough
journey with a successful ending.
CHAIRWOMAN GREEN thanked her. She asked Ms. Karen Timmins from
Eagle River to provide testimony.
MS. KAREN TIMMINS showed the committee pictures of her daughters
Leigh [ph.] and Madison [ph.], her oldest children. She was
married and had four children. She said Leigh and Madison looked
like ordinary children but the pictures didn't show the
disabilities they struggled with. She said the legislature had
played a very important role in Leigh and Madison's lives. She
hoped they would continue to do that for others. She thanked
them for their continued sensitivity to the needs of children
like Leigh and Madison.
She wanted to see her children become full contributing members
of Alaska. She said they lived in Alaska and planned to stay
there. She said Leigh and Madison received core services and had
been on the waitlist for three and a half years.
She said, "Our generation has learned to embrace children such as
Leigh and Madison, which is very encouraging to me as a mother."
She and her husband participated in a training session through
the Stone Soup Group's Institute for Positive Behavioral Support.
She said the training session was a unique method of training
using a collaborative effort to lessen or eliminate the negative
behaviors that seem to be prevalent in so many children with
disabilities. She said Leigh was the target child for the session
because she was in a period of transition from elementary to
middle school. She said that was a difficult transition for any
child and even more so for a child with cognitive impairment and
autism like Leigh. She said Leigh was acting out and failing to
contribute to anything around her. She wanted to learn how to
eliminate negative behaviors associated with that transition to
help Leigh as well as those around her in school. She said the
team included three teachers from Homestead Elementary, two
teachers from Gruening Middle School, the principals and Leigh's
psychologist. She said they met for one-day sessions once a
month for three months and discussed the negative behavior and
how to eliminate it. She said the training process included role-
playing and actual trial and error.
MS. TIMMINS never would have imagined how successful the Stone
Soup Group's program would be. She and her husband had
participated in parent training seminars before but found that
they didn't really apply to a child that wasn't "typical." She
said they felt empowered by the training sessions. Leigh made
the transition from elementary to middle school with very few
disruptions and she was very grateful for that.
She noted the Stone Soup Group's program had also helped many
others because the team members had used the techniques with
other children. She said the domino effect must continue. She
said it was necessary to continue services because they would
eliminate future greater expenses by reaching children at younger
ages.
She said the core services gave her time to take a break. Her
husband was gone for half of the month and she had two other
children. She used the core services money for respite and
tutoring so that she didn't have to fight all of the battles by
herself. She felt rejuvenated and ready to go after having some
time for herself.
She said they plan on keeping Leigh and Madison in their home.
They would be grateful for the opportunity to come off of the
waitlist and get Medicaid waivers to allow them to continue to
have the supports as Leigh and Madison got older and their needs
changed. She said they were a very proactive family and they
would continue to do everything possible to keep the girls at
home and nurture and care for them. Their goal for Leigh and
Madison is independence but they don't know what form that would
take. She said the girls would contribute to society in a
meaningful way but they could not do it alone.
She and her husband thanked the legislature. She asked them to
continue to be sensitive to the needs of the disabled community.
She and her family were a part of that community and loved being
in Alaska. She thanked them for their time and heartfelt
support.
CHAIRWOMAN GREEN thanked her. She asked Ms. Karen Sidell from
Bethel to provide testimony.
MS. KAREN SIDELL said she was a mother of a four and a half year
old autistic boy. She said they were number 1,038 out of 1,200
the last time she checked the waitlist in November. She said
there was an effective treatment for autism called intensive
early behavioral intervention for which there was a very small
window of opportunity. She said if they were on the waitlist for
another three years, her son would be seven and a half and she
could miss the window of opportunity. She said getting the
treatment in time meant the difference between a verbal child and
a non-verbal child and could mean that he would be independent
later on in life rather than dependent on the system. She said
they were so far down the waitlist that she couldn't comprehend
how long they would have to wait. Until then, they would
continue to struggle to provide intensive early behavioral
intervention services on their own.
MS. SIDELL asked that no cuts be made in the budget. She said
one of the goals of the Key Coalition was to have no waitlist and
she hoped to see that one day. She thanked the committee.
SENATOR DAVIS asked what services Ms. Sidell and her son
received.
MS. SIDELL said they basically received one-time grant services
from Bethel Community Services.
SENATOR DAVIS asked if Ms. Sidell's son was eligible for services
through the school district.
MS. SIDELL said he is.
SENATOR DAVIS asked if Ms. Sidell was involved in that.
MS. SIDELL said they were very involved in advocating for
services through the school district. They went through due
process in January and would probably go back in August. Her son
was getting services through the school district but it was a
constant struggle and those services weren't guaranteed.
SENATOR DAVIS thought those services were guaranteed for students
that needed them. She thought Ms. Sidell could get early
intervention for her son at the age of four and something could
be worked out if there was a problem.
MS. SIDELL said they were concerned about the type of services
the school district was willing to provide. The school district
was planning to provide respite care and was not willing to
provide intensive early intervention services with the applied
behavioral analysis technique. She said that wasn't good enough
because her son had potential and they needed to access the
window of opportunity.
CHAIRWOMAN GREEN thanked Ms. Sidell. She asked Mr. Bryan Knight
to provide testimony.
MR. BRYAN KNIGHT gave the following testimony:
My name is Bryan Knight. I live in Anchorage. I am 21
years old and I'm on the waitlist. I attend the ACE
program. I work at Value Village. I live with my
parents and I'm on the waitlist. As of Friday there
were 1363 people on the statewide waitlist, 612 in
Anchorage and Kodiak. And I am number 472. I
understand [the Division of Mental Health &
Developmental Disabilities (DMHDD)] recently had a draw
and 24 names were pulled in Anchorage. How many more
names were added in the same time period?
I was determined eligible for services back in 1985 but
I finally just received core services last December. I
should have received core years ago. I have gotten
passed over. How many other people out there are like
me? Thank goodness the person we work with at DMHDD
straightened things out and helped me finally get core
services. I'm using them for dental work because the
state doesn't provide us with dental coverage.
I have been working hard to become more independent. I
love my parents but I don't want to live with them
forever. I want my own place. I want to cook my own
meals. I want to make my own decisions. But I don't
know if that will ever happen. There are hundreds of
people just like me across the state wondering the same
thing. I know of people in their 30s and 40s that are
on the waitlist and I've been told there are people in
their 50s too.
We are very capable people. We work. We play. We
live in our communities. We contribute to our society
like everybody else and we know we do. I ask myself if
I were ever drawn and finally received the support I
need to accomplish these things. I still don't know
the answer to that question. So I guess I will just
keep on waiting and waiting because I'm number 472 on
the waitlist.
CHAIRWOMAN GREEN thanked Mr. Knight for sharing his story.
SENATOR LINCOLN said she heard Mr. Knight's testimony the
previous night. She said it was very heartwarming to hear his
testimony for all people in Alaska. She knew he would be
successful because he had "the drive."
CHAIRWOMAN GREEN asked Mr. Steve Lesko to provide testimony.
MR. STEVE LESKO said he was just one person in a group of
thousands across rural and urban Alaska called the Key Coalition.
The Key Coalition is in Juneau because it believes the
legislators can make a difference whether they be majority or
minority members.
He said the story he was going to tell was an analogy. He said
the Key Coalition came to Juneau and heard that Alaska had been
diagnosed with a potentially terminal disease called
"fiscalitis." He said reserve funds, surpluses and alternate
methods of feeding the budget were no longer adequate to maintain
Alaska's health. Many treatment regimens have been suggested,
including an income tax, state tax, sales tax, alcohol tax,
cruise tax and intervention in the permanent fund or a
combination of those treatments. He said they found out that
some doctors had recommended surgery in the form of deep budget
cuts across the board. The Key Coalition was concerned about the
suggestion that surgery was going to cure Alaska. They were
concerned that it would not be effective because there was no
such thing as a fair across the board cut. He said legislators
had the capability to be surgeons but the legislature needs to
consider four things:
TAPE 02-18, SIDE B
1. The community programs under the budget request unit (BRU)
of Community Developmental Disability Grants had received
one increase in 15 years. He said that increase ranged from
less than 1% to less than 2% for the 33 grantee agencies in
rural and urban Alaska. Anyone with business sense could
see that they could not survive very long with no cost of
living or increases to the budget;
2. The infrastructure of the community services was eroding.
Budget cuts would cause the beginning of the end. There were
no alternatives to those community services except for
nursing homes, long term care and foster care, which could
also be cut;
3. 16 of the 33 grantee agencies said that 133 to 167
individuals and 300 to 358 families would lose service in
their agencies alone. One agency provided services to rural
communities in a 236,000 square mile area and a 5% to 6% cut
in grant funds would result in at least 25 families losing
respite care. When those families lost services, the
providers would lose their jobs and jobs are already scarce
in that area.
4. The fourth effect would be a combination of the first three.
Jobs would be lost and people would lose the homes they were
renting. Respite care was the glue that held many of the
families together. The costs contained in the base grants
were between $2,000 and $3,000 per person per year. The
State had been willing to tolerate the excesses of
institutionalization for $125,000 to $150,000 per person per
year not so long ago. He asked if it was unreasonable to
expect the families to continue to get $2,000 to $3,000 a
year. He said they were getting by on that. He cautioned
that if respite was denied, there would be separations,
divorce, children placed in foster care and adults
institutionalized and stripped of their dignity and ability
to live independently in the community.
MR. LESKO believed in people and the State of Alaska. He said
that legislators were the surgeons and that was why they were
there. He said the Key Coalition was there because they were the
people of the State of Alaska and they cared about their families
who experienced disabilities. He said the theme of the Key
Campaign that year was "For Tomorrow." He said legislators had
the power to change things for tomorrow. He asked what they were
going to do with that power. He asked them to change the human
condition and leave behind a victory for humanity instead of
saying the time was squandered. He asked them not to cut the
budget and learn that the surgery was successful but the patient
had died. He asked them to do the right thing and keep giving
the hope that their support and caring had provided for Alaska
families with disabilities.
CHAIRWOMAN GREEN thanked him.
REPRESENTATIVE DAVIES asked for examples of eroding
infrastructure.
MR. LESKO said the community disability programs were funded
through two methods. The first was the Medicaid waiver that was
in the Division of Medical Assistance BRU. The other was in the
Department of Health & Social Services' Community Developmental
Disability Grants BRU, which provided over $20 million to 33
grantees. He said that money provided critical interim services
and the administrative and general costs of the agencies. He
said they didn't have enough staff to run their programs because
recruitment and retention was very difficult. He said the
Governor's Council on Disabilities and Special Education had
statistics on the rates of pay for people who work with the
disabled. He said they could make more money at McDonald's. He
said one of the main concerns of administrative and general costs
was the rental market, which had gone up dramatically and health
care costs had also risen dramatically.
REPRESENTATIVE BERKOWITZ said he was going to borrow Mr. Lesko's
metaphor. He said there were those that proposed cutting the
budget. That would be slicing into Alaska's heart and he didn't
think the patient could survive. He said they wouldn't be the
people they wanted to be if that happened. He asked the Key
Coalition to bring to the legislature the message that the budget
was an opportunity for them to be the people that they wanted to
be.
MR. LESKO said the Key Coalition would make that commitment. He
said he was told that they needed to share the pain. He said
that was a misrepresentation. He said his own family wouldn't be
affected by the budget cuts but the weakest and the most
vulnerable Alaskans would be. He said budget cuts would not
share the pain; they would exacerbate the pain of an already
suffering population.
CHAIRWOMAN GREEN asked Ms. McGlone to make her closing remarks.
MS. MCGLONE thanked the committee time on behalf of the Key
Coalition. She asked members to remember how critically
important the services are for so many Alaskans as they went
forward with their difficult deliberations. She said many of the
proposed cuts would cut into services that weren't covered by
Medicaid. She said those services represented the basic supports
that helped keep families together and strengthened the
infrastructure that made Medicaid effective. She said they also
supported people who could face serious jeopardy without those
services.
CHAIRWOMAN GREEN thanked the Key Campaign for coming before the
committee and sharing with them.
ADJOURNMENT
There being no further business before the committee, the Senate
Health, Education & Social Services Committee meeting was
adjourned.
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