Canby woman plans
to start club for
disabled teens

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Karla Johnson (right) of Canby would like to provide more social activity opportunities for disabled youth, including her adopted daughter, Christina Poole, 17, who has cerebral palsy and is deaf. Anyone wishing to help with the formation of a transition club can contact Johnson at 266-3253.

By Stephanie South

Karla Johnson would like to see her daughter have a more rounded social life and learn life skills.

So, the Canby mother plans to start a transition club for disabled teen-agers and young adults.

Johnson's adopted daughter Christina Poole has cerebral palsy and is deaf. The 17-year-old student attends a deaf life skills class at Marshall High School in Portland, but beyond that doesn't have much social interaction.

Visiting her friend's transition club in Corvallis, Johnson said she saw first-hand how much it meant to the disabled teens and young adults to feel like they were a part of something.

"They were so bonded and seemed like such a tight knit group," Johnson said. "It's like they have their own clique . . . I would like to see Christina be able to be a part of something like that."

The club meetings, Johnson said, will be held monthly for ages 14-21 and will have a structured agenda, much of which will include planning for the next meeting. "It's important for them to begin to learn skills to prepare them for adulthood," Johnson said.

"My goal will be to help them learn about transition issues, they'll need to learn self advocacy, self determination and how to work with the community."

The meetings will begin with a check-in to see how everyone is doing. Outings, such as going to the movies or out to dinner, will be planned to encourage the teens and young adults to interact with the community.

"Even something that seems as simple as ordering a pizza can be a big process for them," Johnson said. Ordering pizza prompts them to make decisions and organize a step-by-step plan to make the cheesy dish a reality.

"It's a detailed process," said Johnson, adding that it can take quite awhile for them to decide where to get the pizza and what kind of pizza to order. After those decisions are made, they will have to look up the pizza parlor in the phone book and make the phone call to order the pizza.

They will also have to consider how much money it will cost. "Everyone will be assigned a task, according to their level of capability," Johnson said.

"It's amazing what they can do if they put their mind to it. My job will be to motivate and encourage them to do a skill they don't think they can do. The meetings will really teach them how to come together for a common purpose."

Right now, Johnson said, she is in the beginning stages of starting the transition club and invites input from the public.

"I think this club would benefit the high schools because they (disabled students) would be learning life skills," she said. She can be reached at 266-3253.




Youth Summit seeks
community's input

By David Howell

Attention students and parents: Your visions will be looked into, and your voices will be heard - but you have to get involved!

That's the pledge city and schools officials are making as plans progress for Canby to host its first-ever Youth Summit at the end of this month.

The idea is for officials, parents, students and citizens to identify and discuss what activities, amenities and services children and teen-agers need or want to see in Canby in the future.

The city intends to begin construction of a city skate park in the spring. Some teens began campaigning for a site for in-line and skateboarding three years ago, and soon their efforts will finally bear fruit. It shows getting involved can get results.

The all-day summit will focus on five areas - health and safety, education, employment in the 21st Century, recreation and community feelings.

"The concept of a youth summit demonstrates that we, as a community, value our youths' opinions and recognize them as a valuable resource," said Robin Adcock, the Canby School District's new youth liaison coordinator who has been chosen to lead planning for the upcoming event.

"The outcome from this very labor-intensive day will be what our youth and community would like Canby to be in these five areas. This sets us up for the next step - a gap analysis of where we really are, and who and what our resources are for our youth.

''Work groups will be created to continue this process, and (to) explore ideas on how to achieve our desired goals. We see this as an ongoing process which will involve the entire community."

Three summit sessions are planned, but the framework is still being devised and honed. The morning session will be dedicated to sixth-through-12th-grade students at Canby High, Ackerman, Carus and Ninety-One. The 3-6 p.m.

afternoon session will be for businesses, agencies and community members.

The 7-10 p.m. evening session is aimed at students, parents and citizens in general.

If the March 30 Youth Summit proves productive - and only if people get involved will it prove so - more creative and planned improvements can be made for youth in a more timely fashion in the future.

"The Youth Summit is the first step in assessing our resources and defining our needs for our youth in the Canby community," Robin Adcock said. "We will value youths' opinions . . . We really want a lot of community input."

She was selected from among five applicants for the advertised post, said Canby Schools Superintendent Deborah Sommer. She is being paid $7,500 of the $10,000 Clackamas County Commission on Children and Families' community mobilization grant, which was approved in February.

Her grant-funded job, which continues until June 30, focuses on organizing the summit, collecting information about current school services and student needs and liaising between the city and the school district. She is the wife of Canby City Administrator Mark Adcock.

Remaining grant funds will be used by Canby High School students to produce cable TV ads promoting recreational opportunities in the area.

"I'm expecting to see some ads from those folks sometime in July or August," said school board member Joe Driggers.

The grant is also being used to hire a sports liaison to work with involving Hispanic youth in after-school sports.

"One concern we had as a coalition was how do we involve more parents of our Hispanic youth in their school and community," Robin Adcock said. "By including this person as a facilitator in the community meeting, and advertising it through the Hispanic students, we feel we will provide a linkage to our Hispanic parents to ensure as much parental inclusion as possible."

Sommer said the summit will provide "clear linkage with the schools and the community."

She said more data must be collected to better assess student needs, which consequently makes grant-writing applications more comprehensive and compelling to the state purse-holders. (A grant-writing position is due to be included in the district's new budget, she said.)

The participants of the summit will include the Canby School District, the city of Canby, the Blue Heron Recreation District and Todos Untos, a group that seeks to provide recreational opportunities for Hispanic youth.

"For me, it's real exciting, and I'm glad we're doing this," said Canby Mayor Scott Taylor. "We hope to have good participation."

He added he hoped better ways can be found to bring seniors and civic groups into contact with more local students, especially those with reading problems.

Thursday, March 2, is national "Read with a Child Day," so maybe local people can provide a headstart with helping kids learn to love books.



State legislators save
Spousal Care program

By David Howell

SALEM - Wayne and Patricia Poulson have won a crucial reprieve. The Canby couple feared they would lose the key benefits of the state's Spousal Care program within four weeks. Patricia Poulson has fed, clothed, catheterized, moved and treated her husband since multiple sclerosis deprived him of his mobility 56 years ago.

State lawmakers, however, saved the innovative 13-year-old program on Friday.

The Legislative Emergency Board unanimously approved a recommendation Friday to keep the state program that pays people a subsistence wage to care for their seriously ill spouses.

"I'm thrilled," Patricia Poulson said. "I've worked very hard for this. I've sent letters to everybody I and others could think of. I know we've got a little ways to go yet, but I'm very happy."

Due to legislative cuts in the state Department of Human Resources' budget last session and because the federal government would not fund it, most of the 198 families currently receiving assistance under the Spousal Care program would have lost the state funding of their benefits on March 31.

State Sen. Eileen Qutub, R-Beaverton, chaired the committee that cut the $7 million Spousal Care program as a cost-saving measure in the 1999 Legislature. After hearing people's stories of hardship last week, she changed her mind, and hoped the E Board would save the program.

The E Board vowed to inject money to maintain the program, but legislators want to see how much money is needed after the state rebalances its budget in April. The Spousal Care program will not be enlarged until financing is secured.

The Legislative Emergency Board, which is made up of 18 senators and representatives, controls state coffers in the off years when the Legislature is not in session. It approves, or denies, financing requests from state agencies.

State Rep. Kurt Schrader, D-Canby, who is a member of the influential board, said he was pleased with the board's decision.

"I think it's a big victory for healthier families," he said.

"Over half of the 200 families would be negatively affected if we went to a Medicaid-only package. It would cause the total disruption of people's life, care and jobs, and it became illogical to go ahead and get rid of that program."

If the program had been cut, the spouses of very ill husbands and wives would have had to leave them to find wage-paying work, thus potentially harming family life. The state had planned to hire outside caregivers to aid the unwell at a cost of about $1,525 per month, about $325 more than spousal caregivers are paid.

State Sens. Lenn Hannon, R-Ashland, Rick Metsger, D-Welches, and Ted Ferrioli, R-John Day, and state Rep. Barbara Ross, D-Corvallis largely spearheaded the effort to save the Spousal Care program. Hannon is chairman of the E Board's human services committee.

"We voted to continue the Spousal Care program at this point, and folks like the Poulsons in Canby will continue to be on it," Metsger said.

"I wasn't real happy about it, but it's better than we were. The E Board leadership did not want to set aside dollars, although we did get them to agree that if we don't get (federal) waivers they will have to allocate monies to keep the program going."

Metsger prefers reserving dollars

Metsger said he preferred the option of reserving dollars for the program. "I think it's better to go ahead and let people know we put aside the money in case we don't get waivers," he said.

Metsger said the E Board will work to try to get federal waivers to allow the state to use those federal Medicaid dollars for the Spousal Care program. Metsger has already told the Oregon Department of Human Services that he has requested the federal waivers.

"We need to step up the pressure on the federal government to review the waiver requests to allow federal care dollars to be used for independent choices by these individuals," Hannon said. "Government should not dictate what kind of care is best for people with these kinds of needs. Our citizens know what's best for them."

The U.S. government is expected to approve a one-year project by July 1 that would help pay spousal caregivers in Clackamas and three other counties. The project could eventually be expanded statewide.

"In the meantime, while we're waiting to hear about the waivers, we'll continue the program," Metsger added. "The fact the E Board went on public record as saying they will continue the program, I think, is a major success."

By the end of the 1999 Legislature, 220 families were on the program, but the number dropped to 207 at the end of December, and to 198 at the end of January.

"A majority of the reason those numbers have gone down is those people have passed away," Metsger said. "This is a very vulnerable population."

County has 28 families, Woodburn has two

Twenty-eight of the 198 families are in Clackamas County, and two families live in Woodburn.

"We have more people affected in our county than any other part of the state," he added. "Kurt and I have heard from a lot of these folks, and they are very vulnerable."

The case of Poulsons - who expressed their gratitude for the efforts by Canby's two state legislators - reinforces that sense of vulnerability. Wayne Poulson is one of the longest-living MS-diagnosed patients in medical history, his family believes.

Patricia Poulsen was his nurse, and they later married. They have been on the state's Spousal Care program since its inception in 1987.

He requires skilled care 24 hours each day for services ranging from feeding to catheter and bowel changes, from skin ulcers to regular turning to keep pressure sores from forming.

Last year, a home nurse was required after Patricia Poulsen underwent successful open heart surgery. ("I'm doing fine," she said.) Three or four nurses who came to the home were unable, or possibly untrained, to provide the level of care Wayne Poulson needed, and were turned away.

If home nurses trained in skilled care are not available, the only other option is to place him in a nursing home, which is both expensive and emotionally upsetting for the patient and family.

"I feel I'll be able to take care of my husband, which is as it should be," Patricia Poulson said. "He's not very strong right now, and I don't think he would be able to take being in a nursing home.

''He's a very fine man, and no one believes he's in his 70s . . . I'm thrilled the program will continue."


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