THE In this issue:

OREGON Susan Castillo page3 Interview with our new superintendent

CLARION Ask OAC: Budget Crisis Impacts page 6 Are there legal avenues for people who

lose vital services? A voice for Oregonians with developmental disabilities and their families

Volume 8, Number 3 Apri l 2003

Elimination of Medically Needy Program threatens people's lives

While taxpayers and politicians argue about budgets and revenue,

thousands of Oregonians worry about how they will

stay healthy and alive.

And for Richard Kenna, the year in which he "lost everything" could not have come at a worse time.

RICHARD KENNA STRETCHES OUT HIS LEG on a chair in a coffee shop. "Believe me," he says, "I never gave a thought to things like disability and 'safety net'. It never occurred to me that those things had any­thing to do with me. I was a healthy strong man in the prime of life. "

In the fall of 1997, Richard Kenna was a self employed truck driver with two grow­ing boys, a new pick-up truck and a home in Milwaukie. "I didn't just take a salary. I took every opportunity to work all the overtime I could," says Kenna. "In 1997 I earned $78,000. "

"Of course that is before I heard the words streptocaucus necrotizing faciitis."

Richard Kenna, like many "able bodied" Oregonians, didn't see the relevance of the system of human services. He was, in the words of Clackamas County Social Services case manager Pat Carleton "a guy who was middle class. In a year he lost everything."

But that September his mother passed away. "I was kind of upset and not paying as much attention as I should have," he · remembers. In a moment of carelessness, a box fell out of his truck and knocked him down. "It seemed like no big deal but it did hurt my hip and the next day I went to the doctor to have it looked at." The doctor examined his hip and gave him a shot of cortisone.

Richard Kenna of West Linn

and I had no energy," remembers Kenna. "I went back to the doctor and he asked me to pull my pants down. My hip was red and swollen and stuck out eighteen inches like a balloon. I had a temperature of 104 and felt like I was dying."

"When I woke up the next morning, I felt sick, like I had the flu. My hip was hurting

see Medically Needy, page four

New organizations bring vitality to the advocacy scene Three recently formed statewide coalitions have strengthened the

collective voice of Oregonians with disabilities. The Family Action

Coalition Team (FACT), the Cross Disability Coalition, and Self

Advocates As Leaders (SAAL) all emerged recently, and each is

dedicated to developing a strong disability advocacy community.

The Family Action Coalition Team

(FACT) began meeting over a year ago.

"We realized that many family organiza­

tions had much in common but lacked

a common agenda and often duplicated

one another's efforts," says Becky

Adelmann, a Portland parent and veteran

Family Voices advocate. "FACT is an

effort to reduce waste of resources and to

speak with a more powerful and unified

voice,'' she says. FACT includes 15 family

advocacy organizations such as The Arc, Becky Adelmann, FACT

Oregon Parent Training and Information

Center, and the Oregon Family Support Network.

"Our first step," says Adelmann "was the creation and adoption

of a mission statement that all of the different organizations could

endorse. We are very proud to have so many different groups join

together under a vision of self-determination, community integra­

tion and empowerment."

FACT representatives have testified before the Legislative

Interim Task Force on Special Education and opened dialogue with

Susan Castillo, Oregon's new Superintendent of Public Instruction

(see Interview, page 3). "FACT has intervened effectively in the

decision making process already,'' says Adelmann. "We are taking a

strong and united voice into the legislative session."

About the same time FACT was coming together, representatives

from a variety of disability organizations began talking about the

need to work more closely together on a common agenda. The result

was the formation of the Cross-Disability Coalition.

Currently, about thirty different disability organizations attend

the quarterly meeting of the Cross-Disability Coalition. "It is partic­

ularly important that we develop ways to work together and identify

common issues during this time of limited resources and in this arena

where integrated services are so important if we are to serve all peo­

ple well," says Oregon Disabilities Commission Executive Director

Janine Delaunay.

The mission of the Cross-Disability Coalition is "to achieve

economic, political and social justice for Oregon children and adults

with disabilities through collaboration and leadership." The coalition

provides the chance "for every disability community to sit at one table,

support each other and speak to a eommon agenda," Delaunay said.

In the meantime, Self Advocates As Leaders has grown into a

statewide organization with more than 450 members. Located in

Salem, SAAL is controlled by self advocates who make the decisions

concerning program priorities and hiring of staff. "We have made

strides toward a more mature leadership, where leaders are willing to

share the wealth of opportunities for the good of the group,'' says

Cindy Helvington, Executive Director of SAAL.

According to support staff person Jill Murray, the purpose of

SAAL is "to make life better for people with disabilities all over

Oregon." Toward that goal, SAAL has offered many empowerment

and leadership training programs throughout the state. "We are

keeping our eye on the goal of being a coalition that represents the

diverse areas of the state," says Helvington.

FACT: 503-581-8156 x 214, team@factoregon.org

Oregon Cross-Disability Coalition: 503-945-9941

SAAL: 1-800-410-7069 x 133

THE

OREGON ctARION

A voice for Oregonians with developmental disabilities and their families

clarion (klar'-e-on) n. 1. an ancient trumpet and the brilliantly

clear sound it makes. 2. a call to action. 3. a voice for Oregonians with develop­

mental disabilities and their families.

The Oregon Clarion is a free quarterly publication of the Oregon Council on Developmental Disabilities and is avail­able in accessible formats upon request.

Editor: Michael T. Bailey Art Director: Sharon Lewis Advisory Board:

Becky Adelmann Nancy Hazelett Bill Lynch Jane Squires Jan Staehely Janna Starr Kathryn Weit

Opinions expressed here represent the views of the authors and are not necessar­ily those of the newspaper or the Oregon Council on Developmental Disabilities. Unless otherwise noted, all articles are written by Michael T. Bailey, editor.

For a free subscription, please contact: Oregon Council on

Developmental Disabilities

540 24th Place NE Salem, Oregon 97301-4157 503-945-9941 (Salem, outside Oregon) 800-292-4154 (within Oregon) oddc@aol.com

Submissions: The Clarion welcomes letters, guest opinion columns and press releases from readers. Please limit letters to 150 words and columns to 300 words. We reserve the right to edit all letters and columns. Submissions will be printed based upon availability of space and appropriateness of content. Address and phone numbers are required but will not be printed.

Send your submissions to: Michael T. Bailey, Editor The Oregon Clarion 4265 NE Halsey, Suite #817 Portland, Oregon 97213

Deadline for the June 2003 issue: May 1, 2003

©2003 Oregon Council on Developmental Disabilities

Volume 8, Number 3 Apri l 2003 page2

EDITOR'S CORNER Michael T. Bailey

Oregon's budget cns1s continues to dominate the news. And the news is becoming routine and it is all bad. It is easy for us to become overwhelmed and frustrated with what appears to simply be cold numbers and budgets.

This issue of The Oregon Clarion is devoted in part to an effort to demon­strate the human cost of program and budget reductions. For each of those columns of ever shrinking numbers there is a cost measured in the life of a person.

And it was people that motivated so many to work so hard on Ballot Measure 28. Its passage would have bought some time for Oregon.

In the hours immediately following the election, the state moved with numbing speed and efficiency. Each chilling repeti­tion of program and budget reduction detracts something from the quality of life of some person.

Of course, it is possible that in the near future our economy will grow. Perhaps some now unknown revenue proposal will be adopted and service funding addressed on a long term basis.

No matter how hard we try we have never articulated a strategy in which gov­ernment policy does not have a huge and disproportionate impact on the lives of people with disabilities. That truth makes this community a hostage to economic swings and political moods.

I work in my writing studio on the eighth floor of a building in northeast Portland. Being an early riser I have the opportunity each morning to watch the sunrise. Today, as the ashen dawn is reluctantly bleaching the still dark and formless image of Mt. Hood, I wonder who we are, this community of people with disabilities. Where do we fit? What binds us together? Are we a part of the human family or are we a luxury to be indulged during times of prosperity and a deficit to be eliminated when times are hard?

On the day after the defeat of Ballot Measure 28, I awoke weary and disgusted with life. By evening I had only one hope left - to sleep.

But before sleep could come, I was roused by a phone call from a stranger. At the very moment when Oregon's media was announcing the defeat of Ballot Measure 28, a baby girl with Down syn­drome was being born to this unknown caller and his spouse.

"Could you," he asked, "come to the hospital and talk to us? "

In the twenty-four hours since her birth, I was the first person to tell them how lucky they were, and what joy she would bring to them.

Outside in the hall, this new father turned to me. And I saw in his face, his fine eyes shining in wonder and still­confused contemplation of things he was setting himself to understand. And I thought about this mysterious power which, from this time forth, binds our lives together.

If he had asked questions I would have

told him that fra­ternity is a dream, an obscure and uncertain senti­ment; that while it is unnatural for a man to hate one whom he does not know, it is equally unnatural to love him. I would have said that liberty is too rela­tive a thing in a society currently busy subdividing its elements into the worthy and the unworthy.

But equality is always the same. Equality is a fact. Equality should be the great human formula . . . social equality, for while individuals have varying values, each must have an equal share in the social life; and that is only just, because the life of one human being is equal to the life of another. That formula is of prodi­gious importance. The principle of the equal rights of every living being is infalli­ble and must be invincible. All progress will be brought about by it.

When I returned home the day, little by little, and with dispiriting tardiness, had escaped from the sky into the slender framework of the black clouds of an Oregon winter night. A deathly silence reigned everywhere.

I returned to my early question of who we are in this community and I thought about the community and what I know of it.

Imagination takes over and I think of that cast of persons with power to make decisions about our lives.

In my mind a dialogue on disability plays out.

"There are those who say," now cries one of the somber speakers and com­pelling talkers, extending his hand as though he could see the pageant, "there are those who say, 'how fine they are!"'

And those who say, "there has always been disability and there always will be. "

And those who say "I get fat on it, and my belly matures on it. "

And those who say, "people hate each other. "

And those who say, "babies come into the world and they are normal or not. "

And there are those who say, "I can't see farther than the end of my nose, and I forbid others to see farther. "

And there are those who bury them­selves in the past, on whose lips are sayings only of bygone days, the traditionalists for whom an injustice has legal force because it is perpetuated, who aspire to be guided by the dead, who strive to subordinate progress and the future to all the palpitat­ing passion of the realm of ghosts and nursery tales.

And there are the lawyers and econo­mists who befog us with the rigmarole of theory.

We know that one infirmity of human intelligence is short sight. But the eyes of this community are open. We are begin­ning to make out the boundless simplicity of things. And truth not only invests us with a dawn of hope, but raises on it a renewal of strength and courage.

The Oregon Clarion Volume 8, Number 3 April 2003

Inclusion, accountability, funding: An interview with Susan Castillo In mid-February, The Oregon Clarion interviewed the new Superintendent

of Public Instruction. Following is a

portion of that conversation.

Inclusion for children receiving special education is frequently cited as a signifi­cant reason why education costs are so high. Do you support their inclusion, and how do you answer the critics?

Of course I support inclusion of special

education kids in regular classrooms. I find

the questions from critics offensive. I would ask the critics what they really

mean when they say that every child

matters. Of course, it is partly about getting

funding and then making sure the resources go where they are really needed. Saying that

special education kids are taking all the

funds is just creating scapegoats and avoiding

the real issue, which is how to support all kids to succeed.

those. I also am forming some advisory

groups that will consist of students. I want to

be more connected.

There is a proposal pending in the legislature regarding a "two-tier" funding formula for special education. Do you support that?

I support a healthy discussion about the funding formula for special education. The

Legislative Interim Task Force on Special Education made some recommendations. I

support anything that creates a better climate to make the money follow the kids'

needs. We need to be sure that special

education allocations are directed at the spe­

cial education students.

What role do charter schools play in your 'Vision of our educational structure?

In my opinion, charter schools are still

somewhat in the experimental stage. Some are struggling and some are succeeding.

""Saying that special education kids are taking all the .funds is just creating scapegoats and avoiding the real issue, \Vhich is ho\v to support all kids to succeed."

Would you consider ha'Ving regular interactions with special education parent ad'Vocates to learn more about their li'Ves?

Yes. The Department does that now with the State Interagency Coordinating Council, which deals with Early Intervention, and the State Advisory Council on Special Education. I have met with the Family Action Coalition Team

and intend to do so again.

Additionally, I am planning to create other

advisory groups to help make decisions and

special education parents will be included in

My concern is whether or not they can

meet the needs of all kids. Some districts have

found that charter schools are not necessarily staffed to meet the needs of kids in special education. Obviously the districts have the

obligation to provide supports, so we need to make sure there is better cooperation.

At a minimum, charter schools must

be inclusive and have no barriers for any

kids. The bottom line is that we have chil­

dren in charter schools and we want them to

succeed.

pageJ

Susan Castillo, Oregon State Superintendent of Public Instruction

At the end of your first year in office, what concrete changes would you like to see implemented that will support the inclu­sion of children with disabilities in regular classrooms, kindergarten through 12 th grade?

I think the challenge is how to provide

quality special education in a climate of

expanding class size. I hope to help achieve a

better commitment from the federal govern­

ment to adequate funding. That is the key to

reaching the outcomes I support.

What is the greatest challenge facing Oregon schools today?

Funding. The funding crisis puts more and

more barriers in the way of success. I think

we are on the right path but without invest­

ment, there is a limit to how far we can go. There surely is a limit on how far we can go

on good intentions only. We also need to be sure that we have

credibility with the public and the legisla­

ture. The Department has better data than

ever. We need to use it wisely to maintain

credibility and accept a high standard of accountability for outcomes.

Training opportunities for family members, self advocates, professionals Legislative Advocacy

In these times of budget and program uncertainty, there has never been a greater need for citizen participation in Oregon's decision making process.

Do you have something you would like to talk to your legislator about but are unsure how to do it? Are you interested in improv­ing your ability to influence the policies that affect your life? Would you just like to visit the Capitol and see how the legislature works?

The Oregon Council on Developmental Disabilities is once again sponsoring the popular Advocacy Days training. These cross-disability trainings are free and open to all. People with all kinds of disability, their friends and family, care and service providers and other interested people are welcome to attend.

The trainings take place in the Capitol in Salem, from 9am-2:30pm. Limited financial assistance is available for family members and self-advocates. Lunch is included. Preregistration is required.

Trainings are now scheduled for April 17 and May 15. To register, simply mail your name, address, phone and email, with the date you wish to attend to: Advocacy Days, 4265 NE Halsey, #817, Portland, OR 97213, or email: mtbclarion@attbi.com.

IEP Partners Program The Oregon Parent Training and Infor­

mation Center (OrPTI) is matching parents wanting support at their child's Individual Education Program meeting with an IEP Partner. These volunteers are parents or others who have attended an intensive two-day train­ing about all aspects of special education advo­cacy.

The role of the IEP Partner is to help parents prepare for the meeting, identify the issues, write proposals, and plan an agenda. At the meeting, they will take notes and act as a trained listener who is familiar with special education rules and regulations. IEP Partners model parenUprofessional partnerships and collaboration.

People interested in becoming an IEP Partner must attend the two-day training. Currently, trainings are scheduled for Portland on April 4-5; La Grande on May 16-17; and Medford on September 19-20.

OrPTI IEP Partners are now available to help parents with IEP meetings in Multnomah, Washington, Clackamas, Yamhill, Marion and Polk Counties. More counties will be available soon.

To find an IEP Partner or to register for an IEP Partner Training, please contact Karen Ripplinger at 503-968-7030 or 1-888-505-26 73, ext. 212. Or email: orptikaren@aol.com.

Leadership Training The Blueprint Community Leadership

Training provides training and resources for participants to become more effective lead­ers and partners in advocating for issues of importance to people with developmental disabilities. As part of this training, the teams return to their communities ready and able to conduct their own leadership training activities. The Blueprint Community Leadership Training is action-based and results-oriented.

Areas,

covered in the training include: Information: How to get accurate informa­tion and communicate it effectively; Training: How to do follow-up trainings in your community; Self-determination: Understanding what self-determination is and why it is important; Community organ­izing: Who to partner with and how to do it effectively.

We are looking for teams from communi­ties, consisting of self-advocates, family members and professionals for the next training, Friday and Saturday, May 16 & 17. There is no charge to attend.

To apply or for more information, contact: Evelyn Lowry, 503-649-4506, evelyn@edt.com or Nancy Hazelett, 503-626-5766, hazelett@zzz.com; or log on to the website: www.oddc.org.

The Oregon Clarion Volume 8, Number 3 April 2003 page 4

Reflections on Disability Advocacy STEVE WEISS

GUEST OPINION

During the last quarter of the 20th century, dis­ability activists began to increas­ingly advocate for their own rights and needs.

Building on the strategies pioneered in the civil rights and anti-war movements of the 1960s, people with disabilities started speaking for themselves instead of continuing to rely on non-disabled agency representa­tives to speak for them. This major shift in advocacy is becoming predominant at the beginning of the 21st century, and is most controversial in the area of mental health disabilities.

As someone who has a mental health disability, my own experience as an advocate may resonate with others. For many years, I thought of my psycholo­gical problems as a moral weakness. Even after my disability application was approved in 1991, I did not become involved in advocacy work because I continued to be ashamed of my mental health problems and because I believed I couldn't do anything effectively. I've talked to many people with disabilities, both mental and physical, who suffer from these same self-demeaning beliefs. I'm convinced these attitudes are cultural in origin, and those of us who are disability activists are dedicated to changing those values in our society that encourage us to be ashamed of ourselves.

Medically Needy, from page one

"The doctor put me in a wheel chair and took me across the street to the hospital where I was admitted. It was only a short while before the doctors told me I had developed an infection called streptocaucus

necrotizing faciitis. It is what the public calls flesh eating bacteria."

According to the Howard Hughes Medical Center at Princeton University, up to 3,000 Americans a year die from flesh eating bacteria. It is o_ne of many strepto­caucus infections. Most die within 72 hours of diagnosis. There is no cure. The treatment is simply to cut away flesh faster than the bacteria can eat it. "They either cut it out or you die," says Richard.

"In the next three days I had nine major surgeries. Whenever one operation ended another began."

When Richard left the hospital three months later, approximately eight percent of his body had been removed, according to his surgeon, Joseph Frankhouse, MD. Richard was unable to walk unassisted and had a medical bill of $398,000. "That's when a public system of support for people

I don't think there's anyone with a disability in this country that hasn't been affected by stigmatization. That is especially true of mental health consumer/survivors. Sometimes, the stigmatization is blatant, which is actually easier to deal with because it's being done openly. More often, however, the stigmatization is subtle, making it difficult to prove. In my case, even though I'm a college graduate and have been elected or appointed to many organizations and groups, I learned over time that my credibility with many people is only as good as what I can indisputably prove. I've seen circumstances where agency representatives were hypocriti­cal, evasive and even untruthful in pub­lic statements, but were automatically believed because they were agency reps. Conversely, I've also seen mental health consumer/survivors who told the truth about the system's faults to public offi­cials and were automatically disbelieved because they were consumer/survivors.

Not surprisingly, such double stan­dards produce anger in those of us with disabilities. Recently, a good friend com­plimented me by saying that I combined the right amount of outrage and reason in my advocacy. But there are many people out there, almost all of whom work for agencies, who clearly believe that the expression of any outrage at public meetings is inappropriate. While I agree that people should not be personally attacked verbally while attending a meet­ing, I also believe that the non-violent expression of outrage against injustice of any kind is a necessity for members of oppressed groups. And make no mistake

like me became important, " he remembers. During the next three years, Richard

spent at total of one year in physical therapy learning to walk unassisted. He lost his home and job and now lives in a West Linn apartment on $850 a month plus $10 in food stamps. He also began the process of applying for social security disability.

"I had an IRA account that I set up to send my two boys to college," he says. "I never thought of it as my money. But I had to get rid of that and pay all the early with­drawal penalties. It's long gone now."

In the process of learning to live with a disability he also needed prescription medication costing $949 per month. "Fortunately," he says, "Clackamas County Social Services got me covered by the Medically Needy Program. I have had all the medication I need to keep me healthy. I thought my worries were over when it came to prescription costs. "

But in 2002 Oregon's budget experienced enormous deficits. In its fifth special session that year, the Legislature passed HB 5100 which attempted to deal with the deficit by borrowing, cutting and referring a tax increase ballot measure to the people

about it: People with disabilities are an oppressed group.

I began my life as a volunteer advocate when I was 52. I was able to do this in large part because, for the first time in my life, I had an affordable and safe housing situation, and a stable (but still inadequate) income. There are lessons in this. Although we don't have exact statistics, all indications are that the vast majority of people with disabilities under age 65 have incomes below the Federal Poverty Level, and live in unaffordable and often inaccessible housing. At this writing, an unprecedented crisis of massive state budget shortfalls threatens to further impoverish the disability com­munity nationwide, and especially here in Oregon. For me, the solution to this crisis is clear: While poverty should be eliminated for everyone, we must prioritize the elimination of poverty for all persons with disabilities.

There's no room in this editorial to fully discuss how that can be done. Suffice it to say that the growing move­ment for cross-disability cooperation and solidarity needs to accelerate. More people with disabilities must register to vote and then actually cast their votes. No one with a disability should ever be allowed to go hungry or to be without comprehensive medical care. And finally, the minimum monthly income for people on federal disability programs must be raised to the Federal Poverty Level, and housing subsidies need to be made available to all persons with disabilities that need them.

Steve Weiss is President of Independent Living Resources, Inc.

for a vote. The Medically Needy Program was one of those that would have been restored had Ballot Measure 28 passed on January 28, 2003. Instead, it was eliminated on February 1 of this year.

Richard Kenna first became aware of his prescription medication problems when he received a letter from Clackamas County Social Services. He was one of 1,191 resi­dents of Clackamas County to be notified that his prescription benefits would be terminated if Ballot Measure 28 failed.

According to the memo prepared by Clackamas County on January 24, 2003, the Medically Needy Program in thatcounty typically involved people taking life­sustaining medications such as anti-rejection drugs and were unable to afford them. The highest monthly income in this group was $1,300 and prescription costs could reach as much as $3,000 per month.

"When I learned that I was in danger of losing my medications I absolutely had no idea what to do," says Richard Kenna. What he did do during the first month of no

See Medically Needy, page five

The Oregon Clarion Volume 8, Number 3 April 2003 page 5

·. LETTERS TO THE EDITOR .

To the Editor,

I write with a heavy heart. I want you to

know that the Catholic Archdiocese of

Portland's Office of People with Disabilities

wants to be part of any gathering coalition

to address the future in light of the out­

come of Ballot Measure 28.

I was privileged to work closely with

students from the University of Portland in

supporting the measure. The students held

demonstrations, arranged a ballot box on

campus, used the campus newspaper to

publicize the impact of the cuts and hosted

a brown bag discussion. They are eager to

know what they can do next to help.

We have to be grateful for all of the effort

and the good that came from it. But now,

as needs intensify, we need to consider our

next steps.

I think about how we mobilize when

there is a natural disaster. Anyone dis­

placed because of floods or earthquakes

knows that the Red Cross and other

support organizations will provide for their

needs. This economic disaster has caused

such tragic human suffering, not only to

those who are conscious of the loss in their

lives but also to so many of our people with

disabilities and to frail elderly persons who

are unable to understand the loss of life

supports on which they depend.

We look forward to working with other

groups to address and fix the sad reality

our state is waking up to.

Dorothy Coughlin,

Catholic Archdiocese of Portland

Medically Needy,from page four

coverage was what be believes a lot of others did. He paid for what he could. "I bought $17 5 worth of medications in February," he says. "It's all I can afford."

John Mullin, Director of Clackamas County Social Services, is well aware of Richard's life threatening situation and feels helpless to address it. "In Clackamas County we are using every possible resource, including fundraising, volunteer support, and short-term emergency assis­tance from the Board of County Commissioners. We are doing our part. However, unless there are permanent restorations, thousands of Oregonians will suffer and many will be in life threatening situations without the critical services that have been cut," says Mullin.

"I don't know what is going to happen to me without my drugs," says Richard Kenna. "I am on my own here. I have looked into asking drug companies to help me but that process is slow. My worry is right now. "

While taxpayers and politicians argue

To The Editor,

It is sad that so many people failed to get

the message of Ballot Measure 28 and its

real cost to the most vulnerable Oregonians.

Many people do not accept that we have a

personal and public responsibility for the

common good.

Are these people willing to support others

in a more personal way? Do they believe

that the old "charity" model is best for

people? We must continue to advocate for

services as a right.

A good friend of mine will lose her

vocational training and be essentially

home-bound unless there are somehow,

miraculously, alternatives found. I just

spoke with her and we cried together.

We must work to convince people of the

justness of our cause.

Lynda Brown, Salem

Dear Oregon Clarion,

Reading the "Editor's Corner" from the

December, 2002 issue was very inspiring. I

was especially interested in the editor's

"biases. " As a teacher of students with

severe and profound disabilities, I have

had many of the same biases.

I first taught in special education in the

early 1970s, before P. L. 94-142 was imple­

mented. None of the students I had then

would even meet today's criteria for special

education. They were referred to as the

"six-hour retarded" children, since they

only had a disability within the framework of

the education system. And yet my main job

was to keep them out of other people's way.

about budgets and revenue strategies, Richard Kenna and thousands of others worry about how they are going to stay healthy and alive.

"I ani one of those people who said, this could never happen to me," says Richard. "But it did happen. I can't work. I would if I could. I have all my life until this happened. I doesn't seem right that I might die for the lack of money to buy the drugs that make me live."

But Richard Kenna is caught right in the center of Oregon's budget catastrophe. He is in a race for his life between his need for prescription drug coverage and the state's inability to provide it. "It's just a question of whether or not they get their act together before I die," he says.

At present I am a teacher in a self­

contained life skills classroom. The students

have severe, multiple disabilities. Many of

them do not live in a home setting. Most of

them are believed to be unable to go any­

where without extensive staff support.

Even though the program has existed for

many years, there has never been a formal

curriculum guide for it. We have been

searching for a curriculum suitable for our

student's needs.

Additionally, I have made it my person­

al goal to try to find, for each student in my

classroom, some means of communication

that will be meaningful to their peers.

Progress is slow, but through this search, I

have begun to envision a school, indeed a

society where each person, child or adult,

is a part of the community, where each

family gets enough support to in turn be

able to support their child. Or if, for some

reason, the family is unable to do that then

there will be another family, which is sup­

ported by the same community.

I am very frustrated by the perceived

need for these children to be institutional­

ized for the most part because their fami­

lies don't have enough supports.

So when I read the Editor's Column list

of "I believes," I filled with hope that in

front of your beliefs are roads, or at least

paths, that will lead to those beliefs becom­

ing reality. One of my dreams, starting

with my school and neighborhood, is that a

community can support its members.

Thanks to The Oregon Clarion for another

spark of inspiration.

Merry-Lynn Amsbury, Portland

THE CLARION BULLETIN

A good way to get timely public policy information is to subscribe to The Clarion Bulletin. The Bulletin is a bi-weekly on-line publication that provides the latest information on state-level policy and decision-making impqrtant to Oregonians with disabil­ities and families. It also provides background analysis of the issues so that advocates will have the best advocacy tools available to them.

For a free subscription, send your name and email address to: mtbclarion@attbi.com

PRESCRIPTIO� IIELP: Drug manufacturers in a consortium known as

Pharma (Pharmaceutical Research and Manufacturers of America) may be

able to offer free medications to people who can't afford them. According

to an editorial in the Statesman Journal (1-27-03), more than 34,500 Oregonians took advantage of the patient-assistance programs in 2001. For

a free directory listing almost 50 manufacturers and their programs for

the needy, call 1-800-762-4636.

The Oregon Clarion

Q What is the impact on the Medically Needy Program?

A Oregon's Medically Needy Program

.i\vas eliminated due to budget cuts. It provided medical assistance for

aged, blind and disabled adults who had ·medical bills that, when subtracted from their monthly income, left them with a remaining income at or below 133% of Oregon's TANF grant amount. For an indi­vidual, that amount was $413 per month. The Medically Needy program paid for prescription drugs, over-the-counter drugs, medical transportation, chemical depend­ency services and limited mental health services through local mental health providers. Recent action by the legislature has funded prescription coverage for HIV/AIDS and transplant patients that were previously covered under the Medically Needy Program, until June 30, 2003.

Medically Needy is a joint federal-state Medicaid program. It is a cost-sharing arrangement under which the federal government reimburses a portion of the expenditures incurred by states that elect to furnish Medically Needy Medicaid bene­fits to eligible individuals. States are not required to participate in the Medicaid Medically Needy program but, if they choose to do so, they must adopt a state plan that complies with the Medicaid Act and implementing regulations. Oregon had a state plan and Medicaid Waiver that included a Medically Needy program. State officials, however, amended Oregon's state plan, deleting the program effective January 1, 2003.

Individuals who received services from the Medically Needy Program are not eligible to challenge their termination of services because the entire program has been eliminated. A person losing benefits will need to seek alternative sources for medications and treatment.

Q What is the impact on the General Assistance Program?

A The General Assistance (GA) program was a state cash assistance program for low-income Oregonians

who were presumed to be disabled. The GA program provided subsistence cash bene­fits of $314 per month to Oregonians who were awaiting a final determination of their SSI eligibility by the Social Security Administration. The SSI application and eligibility determination process often takes more than two years. Because of their disabling impairments, GA recipients are unable to work to support themselves during the SSI application period. To qualify for GA, applicants must have had financial resources of less than $50.

Volume 8, Number 3 April 2003

Approximately 2,670 Oregonians received GA benefits. In most cases, once a GA recipient was awarded SSI benefits, the Social Security Administration reimbursed the state of Oregon for the GA benefits that Oregon provided to the SSI applicant dur­ing the federal SSI eligibility determination period. DHS will not provide a hearing to people who are cut off the GA program because the program elimination will not be reversed due to individual circum­stances. Some former General Assistance recipients may still be eligible for services under the Oregon Health Plan.

What is the impact of the current budget crisis on particular programs?

Are there any legal a'Venues for people who

lose these 'Vital seroices? Oregon Ad'Vocacy Center pro'Vides some answers.

Q What is the impact on Mental Health services?

A Publicly-funded mental health services are provided in Oregon through state and county govern­

ments and organizations with which they contract. In recent years, the Oregon men­tal health system has come to rely more heavily upon federal Medicaid funds. This means that people who do not have some form of insurance (such as the Oregon Health Plan) have increasing difficulty in receiving services. Recently, the Oregon Health Plan eliminated mental health and chemical dependency services for over 100,000 adult enrollees. This means that adults who have been receiving community mental health services will be turned away. For individuals in crisis, the civil commitment system can be utilized regardless of insurance coverage. However, the state has eliminated contracts with private hospitals that care for committed people and has stopped a planned expan­sion of state hospital beds. State hospital beds may, in fact, be decreased.

Cuts in mental health services to children have been targeted to kids who are not entitled to Medicaid coverage. Community treatment for 3,730 kids and 164 psychiatric day care treatment slots for non-Medicaid eligible kids have been eliminated. Recent legislative action added a small amount of funds back to the state budget for kids community treatment.

page 6

Individuals may appeal any denial or limitation of services by a community men­tal health agency. However, individuals without Oregon Health Plan coverage are not entitled to receive public funding for those services.

Q What is the impact on Special Education services?

A Special Education services are provided pursuant to the federal Individuals with Disabilities

Education Act (IDEA), interpretive federal regulations and state statutes and regula­tions. IDEA ensures a free and appropriate public education to children with disabili­ties. Parents and students are entitled to contest any denial or limitation of servic­es. For a full explanation of those rights, ask for OAC's Special Education, A guide

for Parents and Advocates. OAC will send you a free copy or you can access it on the web at: www.oradvocacy.or�.

While there have been no specific cuts to Special Education, shortened school years and limits on school services can affect children with disabilities. As we said in the last issue of the Clarion, state budget cuts do not excuse a local school district from providing a child with disabilities a free and appropriate education (FAPE) as required by state and federal law. If a school district limits services because of budget cuts, the parents of affected children should challenge that action through mediation, a written complaint to Oregon Department of Education or by requesting a due process hearing.

Q What is the impact on the Oregon Health Plan?

A The Oregon Health Plan (OHP) changed its eligibility standards as of March 1. People who have been

receiving coverage because they are on SSI or otherwise eligible for traditional Medicaid, and pregnant women and chil­dren up to 185% of the federal poverty level, are not be affected. However, people who have coverage solely because they have low incomes (about 100,000 individu­als) have been moved to "OHP Standard" coverage, which is much more limited than their former coverage (which is now called "OHP Plus"). Among the coverage being lost by those moving to OHP Standard are out-patient mental health and chemical dependency services, durable medical equipment and dental care. The legislature has recently added back prescription drug coverage until June 30, 2003.

See Ask OAC, page seven

,-

The Oregon Clarion Volume 8, Number 3 April 2003 page 7

Cross-Disabi l ity Ral ly gets the Legislature's attention

SAVE EARLY

INTERVENTION:

OUR KIDS CAN'T

WAIT!!

Ask OAC, from page six

If a person who has a disability is notified that they are being moved from OHP Plus to OHP Standard, they may request a hearing to determine which OHP they are entitled to have. They can assert that they have dis­abilities that would make them eligible for OHP Plus even though they are not yet receiving SSI ("presumptively disabled").

Q What is the impact on the Home and Community Based Services for Seniors and

People with Physical Disabilities?

A State and federal governments share financial responsibility for the federal Medicaid program.

States must administer their own Medicaid programs subj ect to mandatory federal requirements, imposed both by the Medicaid Act and by federal regulations.

Participating states must provide at least seven categories of medical services to persons determined to be eligible. These states may also elect to provide one or more listed optional services. States have been encouraged to offer the optional service of home and community-based services (HCBS) to allow elderly and disabled individuals to receive long-term care services in their own homes or in community settings which are less institu­tional than are nursing homes. Such services are provided to those eligible Medicaid recipients who would otherwise require the level of care provided in a hospital or nursing facility.

Oregon's HCBS waiver has been success-

More than a dozen legislators took time away from their budget-balancing marathon to address a crowd of approximately 500 disability advocates gathered in front of the Capitol on March 5 to protest cuts in services. A total of 86 organi­zations co-sponsored the "People with Disabilities and Communities that Care" rally, which came on the heels of yet another dire State revenue forecast. Speakers from various disability constituencies repeatedly demanded an end to budget cuts and called on legislators and the Governor to raise new money to fund crucial services. Despite gloomy budget and weather forecasts, participants' spirits were high and the rain remained in check until the crowd dispersed. After the rally, advocates armed with fact sheets and talking points made personal visits to their Representatives and Senators. Constituents urged their legislators to find the revenue needed to restore vital services already cut, and to raise taxes so that further service reductions will not be necessary.

fully in operation since 1981. Whenever a state acts to reduce or

terminate funding for a recipient's Medicaid services, the state must provide adequate advance notice of such an action. Such notice must contain a statement of what action the state intends to take; the reasons for the intended action; the specific regula­tions that support, or the change in federal or state law that requires, the action; an explanation of the individual's right to request a hearing if one is available, or, in cases of an action based on a change in law, the circumstances under which a hearing will be granted; and an explanation of the circumstances under which the Medicaid services will be continued if a hearing is requested.

Oregon's current process for determining which individuals are in need of long-term care in nursing facilities or in community­based settings under the HCBS waiver is the Client Assessment and Planning System (CNPS). The CNPS is supposed to measure the amount of assistance an indi­vidual actually needs in performing these activities of daily living. Data is collected by caseworkers from Seniors and People with Disabilities and is calculated to deter­mine a person's level of need, from 1 through 17. Eligibility for an amount of service is then determined based on the rating.

Due to budget cuts, Oregon is eliminating services for individuals in levels 12 through 17. A person who is notified that they are losing services can appeal and request that their level of need be reassessed. The appeal may not be used to challenge the elimina­tion of entire levels of services.

We Ta

Q lVhat is the impact on Staley Services?

A As in the "In Home Supports" section above, Medicaid also covers services for people with

developmental disabilities. In 2000, indi­viduals with developmental disabilities and their families sued the state claiming that Oregon was violating the Medicaid Act because it was not providing developmental disability services to all Medicaid-eligible individuals. Advocates and the state settled the case by entering into an agreement in which the state promised to develop a new system for providing services to individuals and their families through "brokerages" and to develop new 24-hour service settings. As part of that agreement, a process was developed for individuals and families to request a hearing to contest any disagree­ment about service levels or conditions.

Because of the present state fiscal crisis, the state has stopped enrolling new people in brokerage services. Negotiations have been underway between the state and advocates to determine if a compromise can be reached to avoid further litigation.

The Oregon Advocacy Center (OAC) is a state­

wide nonprofit organization that provides

information, advocacy, referrals, and legal

counsel and advice to people with disabilities.

Contact OAC toll-free: 1 -800-452-1694,

Portland: 503-243-2081, TTY 1-800-556-5351

www. oradvocacy.org

Send your questions for this column to

The Clarion (see p. 2for contact information).

The Oregon Clarion Volume 8, Number 3 April 2003

Proclamation from the Office of the Governor

WHEREAS: Disability is a natural part of the human experience, and

WHEREAS:

WHEREAS:

WHEREAS:

Developmental disabilities affect more than 60,000 Oregon children and adults, and

People with developmental disabilities have many skills, talents and abilities to contribute to their neighborhoods and communities; and

Everyone wins when people with developmental disabilities receive the supports and opportunities they need to be contributing members of their communities; and

WHEREAS: The abilities of people with developmental disabilities have been traditionally and systematically undervalued, and

page 8

Look who's reading The Oregon Clarion

\WHEREAS; Public attitudes are the biggest barrier to full community integration and inclusion of people with developmental disabilities, and Governor Ted Kulongoski

WHEREAS: Public awareness about developmental disabilities promotes acceptance and understanding, and decreases prejudice and misconception.

NOW, THEREFORE: I, Ted Kulongoski, Governor of the State of Oregon, hereby proclaim March, 2003, to be DEVELOPMENTAL DISABILITIES

AWARENESS MONTH in Oregon and encourage all Oregonians to recognize the ability of individuals with developmental disabilities to make significant contributions to their communities.

C o n s e jo d e O r e g o n d e D i s ca p a c i d a de s d e D e s a r ro l l o • 2 0 6i 3 • E l Arc de O r e g o n O r e g o n C o u n c i l o n D e v e l o p m e n t a l D i s a b i l i t i e s T h e A r c o f O r e g o n

Two posters in one! These 2003 disability awareness posters, measuring 1011 by 2711, are printed back-to-back in full color. For free copies, contact one of the sponsoring organizations: the Oregon Council on Developmental Disabilities at 1-800-292-4154, email: oddc@aol.com; or The Arc of Oregon at 503-581-2726, email: arcofor@callatg.com.

In This Edition

Medically needy program el iminated . . . . . . . . . . . . . . 1

New advocacy organizations . . . . . . . . 1

Editor's Corner . . . . . . . . . . . . . . . . . . 2

I nterview with Susan Casti l lo . . . . . . . 3

Training opportunities . . . . . . . . . . . . . 3

Reflections on disabi l ity advocacy . . . 4

Letters to the Editor . . . . . . . . . . . . . . 5

Ask OAC: I mpacts of budget crisis . . 6

Cross-disabi l ity ral ly . . . . . . . . . . . . . . . 7

The Oregon Clarion Oregon Council on Developmental Disabilities 540 24th Place NE Salem, Oregon 97301-4157

U PCOM ING

STATEWI DE EVENTS

April 1 7, 2003

Advocacy Days Training,

Salem

Contact: Com munity Partnerships,

503-284-4972

April 25, 26 & 27, 2003

Wagon Wheel Conference,

Kah-Nee-Ta, Warm Springs

Contact: Oregon Parent Train ing

and I nformation Center,

1 -888-505-2673

May 2 & 3, 2003

Arc of Oregon Convention,

"Building Tomorrow, Today,"

Eugene

Contact: The Arc of Lane County,

541 -343-5256

May 1 5, 2003

Advocacy Days Training,

Salem

Contact: Com m unity Partnerships,

503-284-4972

May 1 6-1 7, 2003

Blueprint Community

Leadership Training

Contact: The BluePrint Project,

503-649-4506

PRSRT STD

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SALEM , OR

PERM IT NO. 397