ADVOCACY ISSUE

THE

OREGON CLARION

Editor's Note .......................... Page 2

Guest Opinion ........................ Page 3

Ask OAC ••••••••••••••.••••••.••••.•.•• Page S

Waitlist lawsuit ...................... Page S

Council state plan .................... Page 6 A voice for O regonians with developmental disa b ilities and their fam i lies

Volume 7, Number 1 January 2001

Consumers lead advocacy charge in Oregon

By DIANN DRUMMOND THE CLARION

Good advocacy is most celebrated in it's results-improving the lives of individuals with developmental disabilities. It's aimed at empowering individuals to have control over their lives, influencing the service system to be responsive to their needs and including them in their communities.

The faces of advocacy in Oregon include individuals with disabilities, their families, advocacy organ­izations and service professionals. While there is no one right answer to what makes a good advocate, there are more and less effective ways to go about it.

Self-advocates lead the way Self-advocates have moved to the

forefront of advocacy in Oregon with the state's commitment to self­determination. Many individuals with disabilities have embraced the phrase, "Nothing about me without me," to usher out the days when they had little opportunity to control their lives. According to Dayna Davis,

Chair of Self-Advocates as Leaders (SAAL), self-advocates are ready to not only take control of their lives but to accept the responsibility that

Karen Gaffney demonstrates poise

and confidence as she speaks at an

early intervention conj erence.

goes with that. Davis says, "Most of our greatest lessons are learned when we make choices that we find out later were a mistake. All people have the right to take the risks that go with making their own choices." SAAL

"O

promotes self-advocacy through support, leadership training and mentorship to empower individuals with disabilities to speak for themselves and participate in policy­making groups. (See related story, page 8.)

Another self-advocate, Karen Gaffney, formed her own nonprofit foundation to support her advocacy activities. She speaks to groups all over the country and has two special Olympic gold medals under her belt

§ for exceptional swimming skills. To I overcome the barrier of low Ci expectations on the part of others and c; .� even themselves, Karen encourages � individuals with disabilities to build .0 B a circle of support that includes 0 if family and friends and to ignore the

people who give them a hard time. In addition, Gaffney says, "You need to know what your disability means." That includes realizing limitations and how to compensate, but even more important, building on strengths. Karen draws on her memorization skills in her public speaking. She also seeks out learning

experiences that will build competence and confidence. "I have taken a class in public speaking and that has helped my speaking skills."

Families effectively organize

Like self-advocates, family members know firsthand the challenging issues of disability­especially around services and community inclusion. Many, like Sara Geiser who has a son with disabilities, moved from finding other parents for support to participating in key advocacy roles on councils, committees and boards. Geiser, who has been a consultant for Coalition in Oregon for Parent Education (COPE) and chairs the Local Interagency Coordinating Council, says that parents need to prioritize, otherwise they can become stretched too thin. "Pick your battles," she advises.

Geiser has found it critical to put a lid on her anger so that people will listen to what she says. "You need to always have your eye toward the solution rather than what's happened

Please see ADVOCACY , Page 4

Parents take action in Marion County By DIANN DRUMMOND

THE CLARION

Susana Ramirez flits between the phone and the fax machine with the grace of a ballerina. In fact, she is a ballerina. She's also the mother of a son with autism.

clearly defined with an emphasis on action through working collabora­tively with the school district. The group is not a place for parents who approach problem-solving nega­tively or who only

, want to complain.

Ramirez says, "A lot of anger and personal attacks diffuse advocacy."

0 0

W hen she came to the United States from her native Mexico to join a ballet company over twenty years ago, never did she dream that disability would become a focus in her life. Ramirez says, "Ballet was my passion and I never thought I would have another passion in the world until this."

The group initially approached the Salem-Keizer school board with concerns about the quality of their children's education and inclusion in the general education program. Ramirez says board members were receptive but found it hard to relate to students with disabilities because, "They did not have that experience. For them it was something very

=-��..;;..J!"""-���--L-��-'-����..__�if That passion extends far beyond

her own son to a special education advocacy group she and two other Salem parents founded, Parents In Action.

The group has a formal structure including officers and a strategic plan. Ramirez, who serves as president, believes the internal structure has helped the group succeed. The mission and values are

new." However, one board member who

had advocated for her own daughter in the Talented and Gifted program related to their concerns. Their voice was heard.

Over the last year representatives of Parents in Action have attended every board meeting. Ramirez says,

Participants join in a group activity during a community forum organized by

Parents In Action.

"We don't just sit there. We take notes and focus on understanding the issues."

Parents In Action initiated a dialogue with district staff about special education issues. While the acceptance was cool initially, Ramirez says things moved forward

when district officials saw the group was credible and wouldn't go away.

A key to gaining that credibility is honest communication. "We don't ambush; we let people know what we're going to ask. We want people to be honest and we set the tone."

Please see PARENTS IN ACTION, Page 4

THE OREGON CLARION

I was a waitlist zombie

I played the ostrich on election

day, preferring to stick my head in the sand rather than follow

the returns blow-by-blow. A stomach-churning anxiety made

me decide to read the Oregon results in the paper the next day. That would be better than having the very good news or the very bad news tortuously dribbled out.

EDITOR'S NOTE Dia.nn Drummond

r e a c h e d , sending the case to the courts. Or, the i n i t i a l l y agreed upon s u p p o r t s would be g r e a t l y reduced. The bite that those m e a s u r e s

You see, I had a bigger stake in the election results than ever before. My daughter Molly is a plaintiff in the waitlist lawsuit, and I knew that the passage of Measures 91 or 8 would be a serious setback to the recent settlement.

would take out of Oregon's general fund could be fatal.

There was a caveat in the agreement that if either of those measures passed, the negotiating team would go back to the bargaining table.

A new settlement might not be

At risk was the most momentous event in the history of Oregon's developmental disability services, universal access.

Individuals on the so-called waitlist soon realize the term is a misnomer. Webster's Dictionary says, "Wait usually implies staying

THE

OREGON CLARION

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

developmental disabilities and their families.

The Clarion is a free quarterly publication of the Oregon Developmental

Disabilities Council. Editor: Diann Drummond. Advisory Board: Charlotte Duncan, Becky Adelmann, Michael Bailey, Bill Lynch, Valerie Miller, Jane Squires, Jan Staehely, Kathryn Weit

The Clarion is available in accessible formats upon request. It is also

available on the Council's web page at www.oddc.org

Opinions expressed here represent the views of the authors and are not

necessarily those of the newspaper or the Oregon Developmental

Disabilities Council.

For a free subscription, contact: Oregon Developmental Disabilities Council

540 24th Place NE ,

Salem, OR 97301-4157

503-945-9941 (Salem, outside Oregon)

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The Oregon Clarion welcomes letters, guest opinion columns and press releases from readers. Please try to 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 on availability of space and appropriateness of content. Address and phone numbers are requested but will not be printed.

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COPYRIGHT 2001 OREGON DEVELOPMENTAL DISABILITIES COUNCIL

for a limited time for something expected." This wait has meant staying for an indefinite time for something that couldn't be expected.

Universal access will change all that. It holds out the promise of supports to Oregon's citizens with developmental disabilities and their families.

With Oregon's commitment to self-determination, consumers will be calling the shots about what kind of supports we need. We will be transformed from waitlist zombies with glazed looks in our eyes into perky person-centered planners.

Even though the 345 million dollar settlement will not provide everything families might want, everyone will have access to supports-a quantum leap from where we are now.

Well, we know the happy ending of this nail biter. The measures didn't pass.

That leads us to the beginning of

PAGE2

a new process, the implementation of universal access (see related story on page 5).

There are hurdles to cross. Even though the funding is in the Governor's budget, it must pass through the legislature. In the past legislators have been deaf to the urging of advocates and humans services administrators to solve this problem. The lawsuit will hold their feet to the fire this time.

I look forward to reporting on the plaintiffs as they become the first families to receive the supports they've been waiting for. W hat universal access means to their lives is a reflection of what it will mean to the many people they represent across the state.

The line is finally moving. The waitlist zombies are about to get a transfusion.

Don't forget to take lfOllr extra Oregon tt/X ded11ctlon for cltlldren wltlt dlsabllltles.

The Oregon Tax Code allows an additional tax exemption for children with disabilities in Oregon. The procedure for claiming an exemption for the 2000 tax year is explained on page 9 in the Oregon Individual Income Tax Return and Instructions, nonresident and part-year resident or the full-year resident booklet.

For advice or indiyidual assistan�e in completjng your tax form, consult a tax professional or the Department of Revenue at 800-356-4222.

Tireless advocate retires By BILL LYNCH

OREGON DEVELOPMENTAL DISABILITIES COUNCIL

Frequently during the past few months, Dennis Duncan has had to ask his wife, Charlotte, the wry question, "Are you retired today?"

Although Charlotte officially retired as Executive Director of the Oregon Developmental Disabilities Council on September 30, she has been working half time until a new director is found. So on any given morning, husband Dennis is never quite sure if it's the retired Charlotte or the tireless Charlotte he's addressing.

That question will soon be settled. The Council expects to hire a new director early this year.

Retirement marks the end of an outstanding career in develop­mental disabilities. From her years as developmental disabilities program manager for Multnomah County to her seven-year run with the Council, Charlotte's service has been characterized by passion, leadership and determination. She used those qualities perhaps to greatest effect in advancing the self-determination of people with

developmental disabilities. In a tribute to Charlotte published

in the January issue of the People First Connection, Gail Gardner of Portland remarks, "Charlotte speaks her mind. She is not afraid to tell people how she feels on a subject dear to her."

Gardner is an outspoken advocate herself who has had leadership positions on several statewide boards and committees.

She tells a story that reveals a side of Charlotte admired by many: her sensitivity and wisdom as role model and advisor. "Years and years ago," says Gardner, "I had ridiculous dreams for my future. One day I called Charlotte to talk to her about them. She was so kind and gentle with me. She told me a story from her life. I listened to Charlotte. I made the right decision for my life."

James Toews was Charlotte's boss at the Office of Developmental Disabilities Services when Charlotte served as quality assurance manager there prior to joining the Council. Though Charlotte balks at the portrayal, Toews describes her as the "grande dame" of developmental

Please see RETIREMENT, Page 3

THE OREGON CLARION PAGE3

'Tis better to advocate than to whine GUEST OPINION By MICHAEL BAILEY

PROJECT MANAGER COMMUNITY PARTNERSHIPS

During my years with Community Partnerships our community has changed Oregon law to requir� birth to three services for our children; created a medically fragile children's program; set up a Respite Care Plan; closed Fairview Training Center; redirected that money into self-directed supports; added to that funding by taking

advocacy. Is there a difference between

advocacy and whining? Webster's Dictionary defines advocacy as "to support or urge by argument, especially, publicly." It defines whining as "to complain in a peevish, self-pitying way."

W hen did we cease being a community of whiners and become an effective community of advocates?

That occurred when we learned to attach our unhappiness to a strategic plan for change and provided our

"'O c 0 § 8

Q c § i5 ;:.... ..0 B 0 .c 0...

"We have learned that no system which treats

families and persons with disabilities as

secondary considerations or trivializes our right

Michael Bailey jokes with Governor Kitzhaber during an awards ceremony for

Developmental Disabilities Awareness Month in 2000.

of persons can do this work alone. nothing for granted. This is the time We have also learned that to apply our skills and lessons

to control our destiny is worth supporting." advocacy without values has no meaning. Our community is guided in all that we do by the values of self­determination, self-direction and

advantage of a change in Medicaid law and now, finally, are in the process of implementing universal access to services for every eligible Oregonian. An impressive list indeed. How did it happen?

The answer is simple: advocacy. Social change is only possible

when there is dissatisfaction with the status quo. How did we as a community take dissatisfaction and use that it as a tool for social change?

Once again the answer is

community with the tools it needed person centered planning. We have to implement that plan. People were learned that no system which treats always committed but they did not families and persons with disabilities always have the skills and unity to as secondary consideration.s or tum that commitment into positive trivializes our right to control our outcomes. Working together we gave destiny is worth supporting. people the training they needed to Our journey has been marked by tum dreams into realities. sacrifice, hard work and the

We have learned the value of unity inspiration of a common vision of and how to work in coalition with decency and human rights. We are one another. We have learned how no longer whiners; we are advocates. to respect one another. We have Let us remember that the future learned that no one person or group owes us nothing. We can take

RETIREMENT: A gift you give to yourself develop-mental disability services at the county. Says Pankratz, "Charlotte's enthusiasm and drive have always energized me. These are contagious virtues."

Council members Kirby Erickson (left) and Karen Staley (right) look on as

Charlotte Duncan opens a retirement gift during the Council retreat at Silver

Falls Conference Center.

Continued from Page 2 disabilities in Oregon. "She spanned a generation of advocacy," he said, reflecting on the course of a career that went from direct service work, through state government service, to systems advocacy at the Council.

"She reached her most radical notions of how supports should be provided at the end of her career,"

Toews noted. "She became an ardent supporter of self-directed supports and consumer involvement."

According to Ethelyn Pankratz, Charlotte has always exhibited strong motivation for her chosen work. Ethelyn was Executive Director of The Arc of Multnomah County during the eighties when Charlotte was program manager of

Charlotte was also active on the national scene. She served two years as president of the National Association of Developmental Disabilities Councils and is highly respected by her peers. According to Marilyn Sword, who directs the Idaho Council, "Charlotte was the first person I thought to call for help when I started as director of the Idaho Council. She's what I call a "street advocate," someone who walks the walk. Charlotte really sees people with disabilities as valuable and contributing, and she acts on those beliefs."

Steve Ice, regional representative for the Administration on Developmental Disabilities in Seattle, describes Charlotte as energetic and tenacious. "She decides what's right and goes after it," Ice remarked. "So many people get sidetracked or worn down by the barriers to making change. Charlotte is so energetic. She uses every opportunity to let people know what

learned as never before. It is not the time to relax our

vigilance or compromise our principles.

The Community Partnerships

Program will offer spe c i a l

education advocacy trainings on

February 15, March 15, April 19

and May 17 at the Salem YWCA

on State Street. For more

information or registration

contact state coordinator Michael

Bailey at 503-282-6796.

needs to happen and does it with a smile. We're going to miss her."

As her retirement date drew near, Charlotte struggled with the very notion of leaving the work she loves. Her anxiety was noticeably diminished, however, after she received some sage words from a good friend and former colleague at the Office of Developmental Disability Services. Rosemary Hennessey, who also retired after a long and distinguished career in the field, told her friend Charlotte that . the great thing about retirement is "you get up each morning and decide what you want to do with your day." According to Hennessey, "Retirement is a gift you give yourself." That phrase became Charlotte's mantra during her last months in state service.

It was also the slogan on her cake when Council members roasted and toasted her during their annual fall retreat.

It's only right that Charlotte should give herself a gift. She's been giving to others all of her professional life.

THE OREGON CLARION PAGE4

ADVOCACY: Real strength lies in working together Continued from Page 1

in the past." Sonya Fischer is another parent

who has risen through the ranks to become an influential family advocate. Her passion has been in the political arena. As an active member of a parent network, she has hosted legislative coffees co-sponsored by the Community Partnerships Project (CPP), The Arc of Oregon and the Oregon Rehabilitation Association. She finds that to be a very effective strategy to garner support. "It's important to build relationships during the campaign before legislators begin the session where they are pushed in a million different directions."

Advocacy groups help organize and empower consumers

Standing behind individuals and families (and sometimes taking the arrows in front) are advocacy organizations.

The Arc of Oregon and county Arc's organized a statewide waitlist campaign. Cynthia Owens, who coordinated the effort, believes that raising awareness about Oregon's failure to provide services led to the waitlist lawsuit. The Arcs assisted the lawsuit effort, donating staff time and handling publicity. Owens says, "We were at the heart it."

Community Partnerships Project (CPP) has trained scores of advocates who have been influential across the state. The project helps self-advocates and parents gain and use advocacy skills as members of the CPP statewide action network. Former CPP state coordinator Jill

Flynn says, "Good advocacy is not of Oregon, include the Fairview only doing it but teaching others to lawsuit in 1986 and most recently, see the bigger picture." According the waitlist lawsuit (see related story to Flynn, CPP's most important role on page 5). But Wrigley's view is not

involved with service delivery are committed to self-determination. Renter says, "Our job as providers is to find out what individuals want and need and then try to provide it." Independent Environments serves 18 people at five sites. Renter says an essential element to providing individualized supports and choice is knowing the individuals and their families.

Maxine Kilcrease, the Special Education Director of Portland Public Schools and the parent of a son with disabilities, has taken a proactive approach by forming a team of families and educators to develop a district plan for alternative

-g dispute resolution. She believes that � effective advocacy occurs when � problem-solving leads to a focus on § common interests. Kilcrease says,

o "The heart of getting positive results £ for children with disabilities is most 0 ] often the parent-professional

'--------------------------.;;:::m"-= o.. partnership."

Sonya Fischer and her daughter Christine served as hosts for a legislative coffee

with candidate Laurie Monnes Anderson was elected as a State Representative for

House District 22.

is bringing self-advocates and families together with their varied interests so they can have a bigger impact as a whole. "The best advocacy is driven by a vision and feels like you're doing it for the cause." (See gue�t column, pl!ge 3.)

Jim Wrigley, an attorney with Oregon Advocacy Center (OAC), often sees another side of advocacy, the legal one. OAC has been involved in many legal actions on behalf of individuals with disabilities. Two major cases, both pursed in partnership with The Arc

only from the courtroom. He helped negotiate a settlement of the waitlist lawsuit. From that vantage point he sees good advocacy as the right combination of tenacity and respectfulness. "Individuals who provide services see themselves as helping people. It's important to respect that."

Professionals and consumers more effective as partners

Fred Renter, Executive Director of Independent Environments, says that he and many other professionals

It all adds up to a powerful coalition

Individuals, families, advocacy organizations and professionals all have their individual roles to play in advocating for people with disabilities. Dennis Harkins, a national advocate for self­determination, sass _!_hey have an even bigger role when they work in coalition. He stresses that we are all connected through our common humanity. With that in mind, Harkins says, "We can build a community where everyone has power, everyone has an opportunity to speak and everyone's voice is heard."

PARENTS IN ACTION: Group reaches out to Hispanic community Continued from Page 1

Another successful strategy of the group is to dovetail their efforts with a priority of the district, cultural diversity. Salem has the fastest growing Hispanic population in the state. Parents In Actions advocates for a broader concept of diversity than ethnicity, to include disability.

They are also reaching out to the Hispanic community. Parents In Action materials are in Spanish and English. Ramirez, who is bilingual has made a lot of personal contacts. She finds Hispanic parents eager to learn about special education. She encourages them to be active partners in the educational process. Ramirez believes breaking down the language barrier and building trust in the community nurtures cultural diversity.

Parents In Action has also received lots of support by networking with other community and disability advocacy groups. The 50 active members of Parents In Action participate on boards, "Cl

§ committees and advisory groups in § many areas of the community. e A

. o t a recent commumty event .� organized by Parents In Action, � Superintendent Kay Baker was on a

---..i� panel along with district, community, 0 _..;.._ ___ .c:..11���-......:;..i;;.i a': and disability representatives. Panel

Susana Ramirez worked with other core

parents to define the mission and goals

of Parents In Action

members told the audience about community resources and supports for special education families. An

In her speech, Baker emphasized teamwork and collaboration. She highlighted a number of special projects the district is undertaking in response to the concerns expressed by Parents In Action. One of those projects is a complete review of the district's special education policies and procedures by the Oregon Department of Education. Says

§ Baker, "We often have to stand back § from a situation to get a real view of e . ,, Q It.

§ The district will also hold special _...,.o education focus groups that include ;>-.

� staff and parents. And there are plans � to hire an ombudsman who will help

_ __.....___, parents access alternative dispute Many Hispanic families attended resolution. the forum organized by Parents

In Action. Parents In Action members have

opportunity to socialize over refreshments provided an allowed families to meet each other and talk with panel members.

Among the 100 attending were many Hispanic families who listened to the presentations on headphones through an interpreter.

their own goal for the next year, establishing a district special education parent advisory group. Baker did not mention that as one of the district projects, but Parents In Action members, given their persistence and recent successes, will no doubt bring it to the table for serious consideration.

THE OREGON CLARION PAGES

Knowing your rights is key to advocating for yourself Q

I am having trouble finding

an accessible apartment.

,__ _ _. How much is my landlord

required to adapt?

Federal and state laws A prohibit landlords from ....__ ..... discriminating against people wjth disabilities. They are required to make reasonable accommodations in rules, policies, practices or services when such accommodations are necessary to give the person with disabilities an equal opportunity to use and enjoy the rental unit and all common areas.

Does a landlord have to make structural adaptations to an existing apartment? That all depends on whether the housing unit is paid for with public money. A public housing authority, for example, is usually responsible for making reasonable modifications to an apartment.

If no public funds are involved, a private landlord is still required to allow a tenant to make reasonable modifications to a rental unit or common areas that will allow the tenant with a disability full use and enjoyment of the property. Generally, the tenant must bear the cost of making these modifications and the landlord is entitled to ask that the modifications be made in a professional manner. The landlord

may also require that the interior of the unit be restored to its original condition when the tenant leaves if the modifications make the unit harder to rent.

There is no limit to the number of reasonable accommodations or reasonable modifications that an individual with disabilities can request. Each request must be considered on its own merits. However, a request may be refused if it would fundamentally alter the nature of the housing or would pose an undue financial or adminis­trative burden on the housing provider.

If you need help in determining how these laws apply to your situation, more inform­ation is available from the Fair Housing Council of Oregon, 503-223-8295 (Portland), 1-800-424-3247; the U.S. Department of Housing and Urban Development (HUD) Fair Housing Enforcement Center, 1-800-877-0246; or OAC.

Q I am 18 years old and I want

to attend my IEP meeting,

.____=-..... but my parents don't want

me to come? How do I handle this?

A When you turned 18, rights under the IDEA legally transferred from your

parents to you. Now that you are 18, you have the right to attend IEP meetings and participate in educational decision making. Your parents cannot prevent you from attending. The school district still must send notices required under the IDEA to your parents, such as prior notification of a proposal to change your educational placement, but

otherwise all rights that they previously had belong to you.

There are only two situations in which your parents' rights may not have transferred to you when you reached your 18th birthday. First, if a court appointed your parent

as guardian, then your parent could retain the right to make educational decisions on your behalf, depending on the powers granted by the court. Second, even if you don't have a guardian, if the district concludes that you are not able to provide informed consent regarding your educational program, it may appoint your parent or another appropriate

individual to make educational decisions for you.

However, the law requires that you be invited to IEP meetings in which your transition plan is developed or reviewed. You might want to ask the school district to talk to your parents about why it is important that you attend the meeting. Most school districts would probably be sympathetic to your point of view. It might be very uncomfortable for you to attend against your parents' wishes, so it would be important to try to change you parents' mind.

If you want more information about how to advocate for yourself at the IEP meeting, contact the Oregon Advocacy Center or COPE at 1-800-COPE.

The Oregon Advocacy Center is

a statewide non-profit organization

that provides education, advocacy,

referrals, and legal counsel and

advice to people with disabilities.

Contact OAC at 800-452-1 694 or

503-243-2081 in Portland or TTY 800-556-5351.

Send your questions for this

column to "Ask OAC," The Oregon

Clarion, c/o Diann Drummond, 3637 NE Shaver St., Portland, OR, 97212, or e-mail to: diannd@qwest.net

Legal advocacy brings universal access to state By DIANN DRUMMOND

THE CLARION

Now that members of the disability community have landed on their feet after jumping for joy over the lawsuit settlement (Clarion, June 2000), it's time to roll up their sleeves and get to work. The planning and implementation of the settlement agreement is an enormous task on a short timeline. The phase­in of services must begin by July 1, 2001.

After the settlement was signed by the plaintiffs and defendants last February, statewide forums were held to provide information about the effect of the agreement on service delivery across Oregon. Some additional 24-hour services will be available, but the most significant impact is universal access which entitles all adults who are eligible for developmental disability services to receive supports.

Participants at a community forum in Portland discuss the waitlist settlement.

A universal access coalition has been formed to make recommen­dations to the Office of Develop­mental Disability Services (ODDS) in developing a universal access plan. According to Assistant Administrator James Toews, ODDS is committed to an inclusive planning

representatives of individuals with disabilities, family members, providers, county developmental disability offices, ODDS and advocates.

Members were selected through an application process to represent all stakeholders over all geographic areas of the state. They will provide information about the planning process to individuals in their home counties and gather their input.

The coalition recommendations for a universal access plan must meet

Process The coalition has · the terms of the lawsuit settlement.

One agreement is that the service delivery system will be person­centered and based on the principles of self-directed supports.

Non-negotiable settlement terms include developing one universal access plan statewide with a budget driven by the settlement. W hen services are fully rolled out by 2007, the budget will be a $345 million dollar package. About 60 percent will be paid by Medicaid.

Beyond those givens, Toews says that ODDS will advocate for a continuing role for county self-

directed support governance groups. Any group overseeing services under universal access will have a majority of representatives of self-advocates and family members.

Although not required under the lawsuit agreement, Toews wants the plan to address the needs of children. ODDS will also maintain a commitment to individuals currently

] receiving self-directed supports. "We 0 § need to honor plans through their � duration," says Toews.

§ Some elements of a state universal i5 access plan will be affected by a ;>-. � proposed Department of Human ] Services (DHS) reorganization. 0...

Toews envisions a regional structure for universal access that will stabilize budgets over larger geographic areas. In light of the impending reorganization, ODDS is considering allocating settlement dollars county by county until new regional configurations are defined by DHS.

In order to provide staff support to implement universal access, ODDS created a new position, Universal Access Program Manager. Mike Maley, former Executive Director of Oregon Technical Assistance Corporation, says he is excited to take on this very important

Please see UNIVERSAL ACCESS, Page 8

THE OREGON CLARION PAGE6

DD Council sets ambitious agenda through 2003 The Oregon Developmental Disabilities Council completes a

new State Plan for Developmental Disabilities in Oregon

building, technical assistance, collaboration, systems change advocacy, influencing public policy, strengthening grassroots networks, public awareness, and providing leadership opportunities for people with developmental disabilities and their family members. After a year of gathering public input, brainstorming and debating, the

Oregon Developmental Disabilities Council launched a new State Plan on October 1, 2000. Much of the work associated with the plan is being done in collaboration with other Oregon agencies and organizations. The Council's standing committees oversee implementation of the plan.

Pubic �nput for the plan came from more than 200 Oregon Clarion readers who responded to the Council's survey about issues affecting the developmental disabilities community. Diverse focus groups were conducted to gather more in-depth information about some of those issues.

This plan is not static. Each year we will consider making adjustments based on new circumstances, challenges and opportunities. Due to a recent change in the Developmental Disabilities Assistance and Bill of Rights Act, we will soon be expanding this to a five-year plan. The lengthened timeline will allow us to address more issues raised by Council members and the public when the plan was being developed.

The Council is using a variety of strategies to reach the performance targets below. Implementation strategies include trainings, coalition

This plan does not restrict us. The work of the Council is not limited to the specific goals featured in this plan. The Council continues to work for system changes that lead to improvements in all areas of life for people with developmental disabilities and their families.

-

-

STATE PLAN GOALS. & RESULTS

SELF-DETERMINATION The Council's commitment to self-determination will grow even stronger during the next few years as Oregon moves ahead with bold initiatives to provide universal access to Medicaid services and to reorganize the Department of Human Services. The Council sees itself as a crucial player in preparing self­advocates and families members to be "at the table" and actively involved in policy making and implementation at every level. The Council also plays a lead role in preparing professionals to work collaboratively with individuals and families. Finally, the Council is committed to increasing the role of self-advocates and family members in the development and implementation of a comprehensive quality assurance system for community services.

GOAL: Self-determination philosophy is included in all services and supports to people with developmental disabilities. Results include:

� Persons involved in the governance of self-directed supports programs will have the training they need to work together effectively. (2001-2003)

� A strategic state plan for developmental disabilities services will be developed by a coalition of advocacy organizations and providers. (2001)

� A common vision and set of values for self-directed supports and self-determination will be shared among people in the developmental disabilities community. (2001-2002)

� Policies and practices in the developmental disabilities service system will be based on the principles of self-directed supports and self­determination. (2002-2003)

� More individuals currently in services will gain access to self-directed supports. (2001-2003)

COMMUNITY INCLUSION The Council was a major collaborator on the campaign to end wait lists for community services. With the settlement of the Medicaid entitlement suit, planning for universal access moves forward with the expectation it will be funded and implemented in July 2001. The Council continues to have a strong voice in that complex planning process. The Council's commitment to cultural diversity carries forward with a focus on improving outreach to diverse communities and increasing the cultural competence of agencies and organizations that provide services and supports.

GOAL: Supports and services are available to all eligible individuals and families. Results include:

� Community resources, including generic services, will be able to respond to the demand for self­determination and self-directed supports. (2001-2003)

GOAL: Oregon has a comprehensive system for quality assurance and quality improvement for developmental disability services. Results include:

� A system is developed for measuring the quality of fully implemented individual service plans. (2001)

� Local quality assurance committees that establish and coordinate third party reviews are present in 5 counti_es. l�.9_0�1__ ___ _ _ _ __ _ _

GOAL: Self-advocates and family members assume leadership roles in policy arenas at all levels. Results include:

� Oregon's advocacy network of organizations, families and individuals with developmental disabilities is strengthened through the annual addition of 100 members of underserved populations and parents of young children. (2001-2003)

� A coalition of family advocacy organizations is developed, trained and informed to influence the quality of public agency services. (2003)

� 25 self advocates and 50 families receive leadership training in 2001 and are connected to leadership opportunities in 2002.

� Oregon has a strong leadership organization of self­advocates who work for improved services through self-advocacy and quality assurance activities. (2001-2002)

.

� Systems planning is improved through availability of reliable information about the goals and needs of people waiting for services. (2002)

� Eligible individuals and families have universal access to needed services. (2001)

GOAL: Traditionally unserved .and underserved individuals and families receive needed services. Results include:

� The Council, 3 other advocacy organizations and 5 service providers use culturally appropriate best practices. (2003).

� Three Council publications are made available in culturally appropriate formats annually. (2001-2003)

THE OREGON CLARION

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EDUCATION Problems persist in making the public education system accountable for preparing students for adult life and the world of work. Not only is the quality of transition services inconsistent across school districts, state standards regarding transition planning and services are inconsistently enforced. The Council will continue to press for improved transition outcomes. We are also working to strengthen partnerships between parents and schools so outcomes for students are improved.

EMPLOYMENT Opportunities for integrated, paid work have eroded in Oregon during the last decade. The Council will continue to be involved in the development and implementation of new state rules for employment services that attach dollars to valued outcomes. The Council participates on the advisory committee for the Department of Human Services' (DHS) Employment Initiative to ensure that people with DD are included in all aspects of the initiative. The initiative includes the Employed Persons with Disabilities Program, which allows people with disabilities to continue receiving Medicaid benefits while working.

PAGE7

GOAL: High school transition programs adequately prepare youth with developmental disabilities for the future. Results include:

� Three school districts are tracking transition outcomes, including the number of students who graduate with jobs. (2003)

� Families and youth report satisfaction with planning and preparation for transition in three school districts. (2001)

GOAL: Integrated community employment is expanded and improved. Results include:

� Systems barriers to individual choice and control in employment are eliminated. (2001-2003)

� The number of individuals with developmental disabilities achieving regular, integrated employment increases from 10% to 20%. (2003)

� Result: 7 5-100 individuals with developmental disabilities in alternatives to employment achieve their employment goals. (2003)

Systems change does not happen in a vacuum Early in the planning process, the Council worked with a facilitator to develop a

"context map" (see below). That mapping process reminded us that there are many things beyond the Council's control that influence the work we do to improve the quality of life of people with developmental disabilities and their families. Decisions about what to include in the plan, therefore, were based not only on individual and family needs, but on a realistic assessment of what we could accomplish given our limited resources and the larger economic, political and social context within which we all operate. Some factors or trends that make up that context include:

ECONOMIC CLIMATE • Strong but slowing

economy • High minimum wage CONTEX.T

POLITICAL FACTORS • Tax reduction initiatives • Competition for funding among agencies • Changes in political leadership and priorities • Service integration at the Department of Human Services • Changes in laws and regulations outside the realm of

disabilities SOCIAL TRENDS • Growing population • Aging population • Higher demand for

social services

• Low unemployment rates • High cost of housing ORE!fi\ON OEVet.oPmt/'JTA-L-

Pl:>Af;>jt-JTl e-s C..ou..-NGI L

• Increased ethnic and racial diversity

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FoR MORE INFORMATION: The Council's State Plan includes measurable performance targets for each goal. The plan also includes an analysis of developmental disability services provided by state agencies and the barriers to services experienced by unserved and underserved groups. For a copy of those sections of the plan, contact the Council at 503-945-9941 (Salem and outside Oregon), 800-292-4154 (toll free in Oregon), or by e-mail at oddc@aol.com . Please specify if you need a copy in an alternate format.

THE OREGON CLARION PAGE S

SAAL uses theater to ask for state support UNIVERSAL ACCESS: Implementation underway

Continued from Page 5 By DIANN DRUMMOND

THE CLARION

Self-Advocates as Leaders (SAAL) recently presented James Toews, the state Assistant Administrator for Developmental Disability Services, a stool leg with a $70,000 price tag attached.

The s'ymbolism was catchy. According to SAAL chair Dayna Davis, an effective developmental "O disability service system is § like a three-legged stool with � " . . . professionals, families, and self- CS advocates working together." SAAL .� members represent the self-advocate ';, .0 leg of the stool that has historically B 0 been missing. � L_ ...........

job. "This is a targeted staff effort that will put resources behind fully implementing the settlement."

Both ODDS staff and coalition members are feeling the challenge of developing a universal access plan. Toews says, "We are grinding it out one yard at a time. It's a very difficult planning process."

Although the task is daunting, Jim Wrigley, an attorney for the lawsuit, advises not to lose sight of the big picture. He says the settlement is a win-win agreement. "It's great for the plaintiffs and the state. It advances the services available and, at the same time, creates a process to deliver services efficiently."

The group is asking the state to provide funds to match the financial support they receive from the Oregon Developmental Disabilities Council (ODDC). They plan to use some of the money to open an office and hire an executive director. They are ready to take the next steps to becoming an independent voice in

SAAL member Cindy Helvington presents James Toews with a money bag to fill

to help fund the group. Charlotte Duncan enjoys the moment.

Nancy Hazelett, a member of the coalition agrees with Wrigley. After a frustrating all-day planning meeting, she reminded the group, "We can't lose sight of what this is all about-delivering services to people."

Oregon. Charlotte Duncan, Executive

Director of ODDC, has worked with SAAL, which organized as a coalition last year (Clarion, April 2000). She says the group wants to expand its membership statewide through outreach and training. The goal is to increase self-advocates' leadership and participation in policy-making. According to Duncan, "To accomplish this, self­advocates need to be able to speak for themselves as individuals and also know how to effectively participate as group members."

Duncan says the key to gaining these skills is mentorship. Support, role-playing, and coaching-even

drama coaching-has helped the group's advocacy efforts, she says. According to Davis, SAAL strongly values mentorship and assisted in the development of a "how-to" guide which was presented to Toews.

For his part, Toews describes the dramatically delivered request as great theater and great advocacy. "I think it's a very good strategy to help self-advocates focus on their message and provide them with a script to deliver it."

After being presented with the chair leg, a money bag to fill, and a giant-sized check to sign, Toews definitely got the point. "I will really try hard to find this money." He says ODDS fully intends to provide the matching funds to SAAL and is currently in the process of looking for budget resources.

With its flair for theater, SAAL would be a strong candidate for an academy award of developmental

Look wlto 8 reading tlte Clar/on!

Attorneys Mary Tarbox and Bob Weaver 's valuable work on the waitlist lawsuit

was provided gratis by their firm, Garvey Schubert and Barer. Weaver says,

"Our practice is committed to social issues and this was a very worthy one. "

disabilities. When asked if they plan to continue with this brand of advocacy, SAAL staff Cindy Helvington replied, "It's more effective to do it that way than to type a dull letter."

Advocacy in Oregon got a shot in the arm when another batch of self-advocates and

family members graduated from Partners In Policymaking. Each graduate gave a

brief speech at commencement outlining his or her advocacy goals.

In the next issue of The Clarion: Cultural Diversity

ADVOCACY ISSUE: WHAT'S INSIDE

Advocacy • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • Page 1

Parents In Adion • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • Page 1

Editor's note . • . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 2

Guest opinion • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • Page 3

Ask the Oregon Advocacy Center • • • • • • • • • • • • • • • • • • • • • • • • • • • • • Page 5

Waitlist lawsuit • • • • • • • • • • • • • • • • •• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • Page 5

Council state plan • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • Page 6

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