The challenge for leaders is to live up to their fundamental responsibility ashuman beings: to treat others as themselves. — KESHAVAN NAIR, A Higher Standard of Leadership:

Lessons from the Life of Gandhi

Tri-CountiesRegional Center

Newsletter

July 2002

Tri-Line

LEADERSHIP“We must ask ourselves what we are willing to do to be successful.” — KESHAVAN NAIR

A MATTER OF PRIDE

Capitol Steps, Sacramento

For those of us who are accustomed to legal theories, we think in terms of rights. When rights are violated, thereare legal remedies. But is it reallyabout rights?

Mahatma Gandhi was oncepresented with a petition on universal human rights. Hisresponse was: it isn’t about rights. It’s about responsibility.

If each person is responsible and acts responsibly,there will be no issue of rights. And what might wemean by the term, responsibility?

Everyone who knowsand understands TheCommunity Imperativedeclaration has anobligation to act.

I think it means a responsibility for fairness and justice.In the West you have heard people say, “You are yourbrother’s keeper.” Particularly here today, I prefer theEast because they say, “You are your brother.”

If I am responsible, what have I been doing to carryout those responsibilities?

First of all, my staff and I have embarked on a five-year effort to create community services and supportsfor everyone in our community that currently residesin a state-run developmental center. I hope that mycolleagues will join me in this effort to define a time wheneveryone will be out of the institutional settings.

Secondly, for 20 years I’ve encouraged organizedlabor to be our partners in this effort, that we mightliberate valuable professional resources now locked up inthe state-run developmental centers.

For more than 20 years we have said capture thevalue of the state developmental center real estatebefore one more piece of land gets sold with the resourcesgoing to the state’s general fund, where people with devel-opmental disabilities do not benefit.

Continued on page 3. . .

It’s About ResponsibilityEdited from a speech by Jim Shorter, Executive Director, TCRC

The Community Imperative Conference — Oakland, California January 2002

The Community Imperative

A Refutation of All Arguments in Support ofInstitutionalizing

Anybody Because of Mental Retardation

1979

The Center on Human PolicySyracuse University, New York

In the domain of Human Rights:

• All people have fundamental moral and constitutional rights.

• These rights must not be abrogated merelybecause a person has a mental or physical disability.

• Among these fundamental rights is the right to community living.

In the domain of Educational Programming andHuman Services:

• All people, as human beings, are inherently valuable.

• All people can grow and develop.

• All people are entitled to conditions which foster their development.

• Such conditions are optimally provided in community settings.

Therefore:

In fulfillment of fundamental human rights and insecuring optimum developmental opportunities, all people, regardless of the severity of their disabilities, are entitled to community living.

Page 2

It’s About Responsibility continued . . .

Page 3

For more than 20 years I’ve said that we are going to reach the objectives of communityinclusion only if we have a plan to get there. Lo andbehold, the Supreme Court agrees in its June 1999 deci-sion in Olmstead v. L.C. and E.W, stating loud and clearthat the denial of community placements to individualswith disabilities is precisely the kind of segregation thatCongress sought to eliminate in passing the Americanswith Disabilities Act.

For more than 20 years many of us have said wedon’t need to have a community system and a state-run developmental center system. We need only onesystem to serve people with developmental disabilities.

Finally, our system has to have the basic commonrespect to include the people who are served in theplanning for themselves, their lives and the system.

I don’t know how else to say it.

This group once lived on isolated campuses at state developmentcenters. Each has moved into the community.

“I can go to the library to look at books.” — BRIAN JONES

“I help people by preparing food for Meals on Wheels.” — MELISSA MOREL

“It feels like a real family.” — SUSAN COTTON

“I don’t blow up anymore.”— MAXINE GLENN

In California, the system of community-based services for persons with develop-mental disabilities is hurting.

Reimbursement rates for providers are too low tomaintain trained staff. Many programs have beenforced to close for lack of funds, and new programs arenot taking their place.

As the funding crisis in the community system deepens, we have seen growth in new admissions to the old and decaying state-run developmental centers.This is not because individuals want to be committed toan institution, but because appropriate services aren’talways available in the community.

The developmental centers represent an old-fashioned, institutional system of care. Theyisolate people with disabilities from their homecommunities and require huge expenditures just to maintain the grounds and buildings.

Our job is to make sure that as the developmentalcenters are phased out, their funding and assets are preserved to benefit the community system of care.

That is why I have introduced Assembly Bill 896, whichwould establish the Lanterman Trust Fund. This fundwould be capitalized through the sale or lease of devel-opmental center grounds and buildings, and would beused exclusively for the development of community-based housing and services to meet the needs of peoplewith developmental disabilities

Unfortunately, the fear of job loss on the part ofworkers in the developmental centers stopped the billin the Senate Health and Human Services Committeeand took the pressure off the Davis administration tonegotiate the bill seriously.

Your help is needed. Together, we will do right by ourfriends and family members. Please take the time to writea letter, postcard, send a fax, or call the governor and yourlegislator (legislators listed on back page).

Governor Gray DavisState Capitol BuildingSacramento, CA 95814Phone: (916) 445-2841Fax: (916) 455-4633Email:governor@governor.ca.gov

Page 4

A message from Assemblywoman Dion Aroner“The developmental centers represent an old-fashioned, institutional system of care.”

What do direct carestaff get paid?

$15,800 -$18,500annualsalary

to care forpeople with

developmentaldisabilities

living in thecommunity

$36,000 -$52,000annualsalary

to care forpeople with

developmentaldisabilities

living in the7 state-run

developmentalcenters.

What does it cost?

$12,000average annual

cost of servicefor people with developmental

disabilitiesliving in the

community

$163,000average annual

cost of servicefor people with developmental

disabilities in the 7

state-rundevelopmental

centers.

170,000Californians

with developmental

disabilitiesliving in the

community

3,700Californians

with developmental

disabilitiesin the 7

state-rundevelopmental

centers.

Where do people live?

Tri-Counties Regional Center is a leader in the effortto liberate people from Developmental Centers andmove them back into homes in their communities.

Bringing our people homeLee, Brent, Thomas, Fidel, Daniel, Thomas,Edgar, Patricia , John & Jermaine have movedfrom:Porterville Developmental Center — Porterville

Population 813Opened in 1953668 Acres105 buildings — 1,137,514 sq. ft.

Mary has moved from:Lanterman Developmental Center — Pomona

Population 654Opened in 1927302 Acres117 buildings — 1,056,569 sq. ft.

Charlene, Shawna, Victoria, Alex, Tom,Trevor, Scott & Jacob have moved from:Fairview Developmental Center — Costa Mesa

Population 805Opened in 1959Employs approximately 1,700 staff

Jane & Renee have moved from:Sierra Vista — Yuba City

Population 34 (55 bed facility)Opened in 200052,000 sq. ft.

Shawn & John have moved from:Canyon Springs — Cathedral City

Population 37 (63 bed facility)Opened in 200057,000 sq. ft.

Page 5

The Community Placement Plan

A statewide process that regional centers throughout California use to move people

from state operated developmental centers into the community. Tri-Counties

Regional Center has been a leader in moving California toward deinstitutionalization, and

Charlene’s story on the pages to follow will undoubtedly remove the question, “Why?” from

the minds of some and pose the question, “What has taken so long?” in the minds of others.

Charlene and Lisa West. Lisa is a TCRC Developmental CenterLiaison whose job is to get people out of the DevelopmentalCenters and moved into homes in the community.

Who has moved between August 2001 and June 2002?

In February, I visited Charlene, a 45 year old womanliving in a locked behavior unit in Fairview state-rundevelopmental center where more than800 people live.

I entered the unit once the door wasunlocked by staff, and stood for just amoment looking down a narrow anddimly lit hallway where fifteen or twentypeople with developmental disabilitieswere milling around. The lightingseemed yellow.

The walls were gray. Well, at leastthat is what I remember. They may havebeen white — they just seemed gray, asdid the tile floors. I could hear the heelsof my boots click as I started to walk down the hall —the sound seemed to echo.

There wasn’t a picture or a decoration on the wall— nothing that would reflect a person’s image. Didpeople know they had an image?

From where I stood,there weren’t any windows that wouldgive a person a viewof the day. I lookedaround and wonderedif people inside knewhow lovely the weatherwas outside.

Most everyone I saw and met was behaving in aninappropriate manner, and asking inappropriate ques-tions of strangers that entered the hall where they stood.I was asked a few questions too, but don’t rememberwhat they were. I remember the faces, though. They

weren’t faces like yours or mine — they were faces lostand searching for something to do, a reason to be. Some

of the people were screaming, andpounding on walls and doors.

Charlene will be moving out of thebehavior unit soon into her own home insupported living. The thought of a home isan exciting and frightening prospect forCharlene. She hates it there in the develop-mental center. I asked her how she feltabout leaving and she looked me square inthe eyes and said, “Thank God!”

Charlene tells me her every move is watched there, her every action is

monitored, and she has been physicallyabused by her roommate. There is little privacy and thescreaming never ends. “It gets worse aroundlunchtime,” she said. “It never stops.”

Charlene won’t eat breakfast or lunch anymorebecause the same thing is served every day.

Charlene is also afraid to leave. Living in the community has been a nightmare. She has lived in psychiatric units, friends’ houses, cheap motels, grouphomes, hooked up with the wrong kind of men, andwandered the streets homeless.

Charlene is preparing to move into an apartment in an area she knows, with a roommate she likes.Charlene will have 24-hour supports from supportedliving professionals, and a psychiatrist will work withher to help her regain the self-esteem that disappeareddecades ago. A dentist will give Charlene new teeth —she doesn’t have any.

A job awaits her arrival, and she will go to the grocery store to buy the food she likes — when shewants. “I’m a good cook.”

She can hardly wait to move, she’s afraid to leave,and worries about making poor choices again.

Page 6

Charlene — Life in a Developmental CenterThe Community Placement Plan

By Terry Boisot

Charlene at the developmental center

Page 7

Charlene — A Window with a ViewThe Community Placement Plan

By Terry Boisot

It was June when I saw Charlene again. Her sched-uled February move from Fairview DevelopmentalCenter was delayed after another resident scratchedher so badly she spent about two weeks in the infirmary. Charlene was in a deep depression when she finally left. Recovering, shehas been living in her own home inPaso Robles now for three months.

Charlene’s apartment is located justbeneath golden rolling hills scatteredwith oak trees, lined with vineyards andcountry roads. When I drove up,Charlene and Laura (her supported liv-ing staff) were pulling into the parkinglot, returning from errands downtown.I couldn’t believe my eyes.

Charlene was wearing a light blue,flowered t-shirt and matching shorts. She had on newwhite sandals that she loves. She walked slowly, andslumped a bit.

With her own key tothe small apartment,Charlene let me in, notstaff. The first thing Inoticed were the two kittens cuddled uptogether on the couch inthe living room. I askedher what their nameswere. “The calico cat isLaura. I have six plantsnamed Laura too.”

Laura is the name of the woman who supportsCharlene in her new home during the week. They havebecome good friends and Charlene has reminders ofthat friendship everywhere.

I took a good look at Charlene and noticed her hair.She changed it. “The lady next door is a beauty operator

and she gave me a permanent and dyed my hair. Itturned out too red; I feel like I’m an apple. I want itreally blonde.”

I stood in the middle of the living room and took agood look around. The view from thewindow is beautiful and the shade ofthe oak trees looked inviting, as it wasmore than 90 degrees outside.

Inside looked like a real home. Thecouch and chairs were soft, the kitchentable had rounded corners, and carpetand throw rugs filled the apartment.Most people wouldn’t know the interiorwas designed to keep Charlene safeduring one of the violent seizures thathas knocked out all of her teeth overthe years. But she doesn’t have seizures

much anymore. The new doctor is seeing to that. When Charlene smiles from ear to ear, I asked the

obvious. “Charlene, when are you going to get somenew teeth?”

“I have an appointment,” she said. I sat at the kitchen

table with Charlene asshe wrote a check fromher personal bankaccount. Imprinted on the upper left handcorner of her checkswas “Praise the Lord.”After she asked me howto spell “twenty,” wechatted for a while and talked about her upcoming trip to the Alpaca farm and about the medication herpsychiatrist prescribed for her depression.

“I’d rather talk about my problems, and not betakin’ pills all the time.”

Welcome home, Charlene.

“People have more freedom to do what they want,when they want, and how they want.”

— Lisa West, TCRC Developmental Center Liaison

Charlene with Laura Marsh of NCI,bringing dreams to life.

Page 8

The Tri-Counties RegionalCenter Leadership Project, aprogram of the Alpha ResourceCenter of Santa Barbara, isempowering families and peoplewith developmental disabilitiesto accept responsibility forchange in the developmentalservices system, now and in the future.

More than 50 yearsago, the parent movementwas inspired by parentswho desired more fortheir children than aninstitution — the onlyoption outside of theirhome. The parent movement brought toCalifornia the LantermanAct, a part of Californialaw that makes a promiseto our children to providethem with supports andservices which will enablethem “to approximate thepattern of everyday livingof non-disabled personsof the same age,” so theycan “lead more indepen-dent and productive lives

in the community.”Despite this promise,

California is ill-prepared to support 170,000 children andadults with developmental disabilities in their communities,and now the state is facing a stag-gering $24 billion budget crisis.

Members of the LeadershipProject have testified at legislativebudget hearings and a legislative

hearing on deinstitutionalization in California, and havebeen interviewed by the news media. Members have metpersonally with numerous legislators, the governor’soffice, the director of the Department of DevelopmentalServices and his five deputy directors. Their presence atthe State Capitol is becoming commonplace, their facesknown, and their message is consistent.

A message from the Leadership Project Coordinator.

Timing is everything and the time is now. It is only with the persistent

voice and presence of people with developmental disabilities and families

that we will be assured of secure futures. Please contact me at

(805) 252-3860 or email me at tboisot@silcom.com to learn more.

Accepting Responsibility for ChangeThe Leadership Project

Missy Runnels and Senator Chesbro

Assemblywoman Hannah-BethJackson and Warren Mattingly

Terry Boisot

Page 9

“It was a great experience for mewhen I went up to Sacramento forthe Olmstead and budget hearings.It gave me the opportunity to speakto legislators at both hearings. I gotto tell them how important it is tome that they don’t cut the budget”

— Missy Runnels, Self-advocate, Advisor to People First, Santa Barbara Council for Self Advocacy

“For the first time I saw not onlysupport staff, parents of those whouse services, as well as those who useservices themselves, come togetheras a unified group to testify beforeState Legislators. And they all didan excellent job!”

— Ingrid Alejandra Innecken, TCADD Board Member,Leadership Council Member

“Being involved with theLeadership Program has had a profound effect on my life. In thepast few months I have learned somuch by visiting our elected repre-sentatives, testifying on the last fourpublic budget hearings, includingthe $52 million dollar cut to the 21 regional centers.

I am outraged that 2% of California’s developmentallydisabled population now institutionalized is served by 25% of the budget. Even though I have not yet visited an institu-tion, I have read the reports of the breakdown in its cost, and hear of the unspeakable conditions - no rights to personalchoice like what to eat or when to eat, or simple freedoms,like not being tied down or being able to walk around orbeing overmedicated.”

— Lori Boehm, Mother to Nicholas

What members have to sayThe Leadership Project

Lobbying the GovernmentBy Peter A. Stoner, self-advocate, writer and legislative advocate

It was one heck of a great piece of lobbying bypeople with disabilities from up and downthe State of California.

On the eighth of April of this year theLegislature of California held hearings on theGovernor’s proposed budget, which featurescuts for community-based services for peoplewith disabilities. There were actually twohearings dealing with the budget cuts. One wasbefore an Assembly subcommitee, and the otherwas before a Senate subcommittee.

At the Senate subcommittee they politely listened to all of us testify, said, “Thank you verymuch,” and that was the end of that.

At the Assembly subcommittee, however, it wasa different story. They listened politely, but they

also asked questions. Then right in the middle oftestimony a member of the committee said,“I think we’ve heard enough. You all knowwhat we have to do.” After that we were allpleasantly surprised when the subcommitteevoted to restore the funds that had been cut.

The Chairwoman, Dion Aroner, said, “Idon’t think you realized it yet, but you’ve just

won! Its only the first step, but take the victory andrun with it.”

Up until then most of us felt like we were justspinning our wheels, no pun intended, but this gaveus a real shot in the arm. We left Sacramento thenext day in a very good mood, but knowing we stillhave a lot of work to do.

Everything we’ve done up until now (the letterwriting, local legislative visits, andlocal community advocacy) is still veryimportant and effective, and we mustcontinue to do it all.

But it’s obvious that many majordecisions and laws that adversely affectour lives are being made inSacramento (often by people whodon’t even know us at all). WE HAVETO BE THERE so they can see theaffect of their decisions on faces, notbudget figures. Then we will knowthat we have done everything withinour power to help ourselves and thepeople who help us.

We can and must be as vigilant as we need to be!It’s the next logical step in advocacy. First you call,then you write, then you BE THERE! TheLeadership Project makes that possible.

To most consumers, Sacramento was once a far off

distant land, a place to visit to attend a conferenceonce a year (if we were lucky). We knew that the State capitol andlegislators were there, but they weretoo far away for us to reach. Now,Sacramento and the legislators thereare becoming a neighbor, a familiarfriend, and more importantly — aplace for positive REAL change.

We can, are, and will continue tohave an impact on the decisions thatare made which affect our lives! Joinus, and help us expand The LeadershipProject. It’ll be one of the best thingsyou ever did – for yourself, and forcountless others.

Stephen Day Consumer Advocate, TCRC(805) 560-3757 x 11 email: TCSD@tri-counties.org

Page 10

Calling All ConsumersThe Leadership Project

By Stephen Day

“The Leadership Project is the biggest boost to Self-Advocacy in 25 years.”

Bob Butler of San Luis Obispo, AssemblymanKeith Richman, and Stephen Day of Santa Barbara

Calling All ParentsThe Leadership Project

By Keri Bowers

When I first becameinvolved in this Leadership Project I had no idea how the movementwould change myperspective and goals.

As an advocate and mother of a child havingautism, prior to joining the Leadership team, I saw the world of disabilities through the eyes of my youngson and others like him who had immediate needs forservices and programs.

While I understood that the Individuals withDisabilities Education Act was never fully funded, and

that budget cuts by our governor were imminent, I had little idea how grave the situation really is.

I have learned that my own child and childrenlike him will potentially be denied choice andopportunities to live as vital members of our community when they reach adulthood. The system must change.

I have had the privilege to visit Sacramento onnumerous occasions to meet with elected representa-tives, and testify at public hearings on budget issues. I have learned that California’s 170,000 plus peoplewith developmental disabilities are few in comparisonto what Sacramento considers a large constituency.

We must unite. Please join us, and let Sacramentohear your voice.

California is experiencing a staggering budget crisisand is expected to be in the hole by $24 billion. It’s largerthan the combined budgets of the entire University ofCalifornia system, the California State University system,the community college system and the prison system.

Many programs needed by people with developmentaldisabilities to live, learn, grow and work in their communi-ties have been targeted by the Governor for cuts.

No legislator, legislative staff, or the Governor mustleave office without knowing we have names.

A letter from Liz’s fatherBy Bruce MacKenzie

Dear Governor Davis,

My daughter’s name is Liz. Sinceshe was born 21 years ago, Lizhas always been an integralmember of our family. She has two brothers and asister. Up until high school, she was included in theregular classroom at her neighborhood schools. As ateenager, her body began to betray her: she lost herability to swallow, which led to tube feeding; andshe dislocated a hip, which required surgery. Shefound it a struggle to breathe or digest her food andto straighten her spine it had to be fused. Over thespan of a couple of years, she went from a healthykid in a wheelchair to a young lady who is called“medically fragile.”

The toll on our family was great. In spite of sentiment in the Lanterman Act to the contrary, thestate’s policies and practices are designed to forcepeople like Liz into nursing homes and large state-run developmental centers. This was unacceptableto Liz and our family. With the help of our Tri-Counties Regional Center case management team,we designed a system of services and supports forLiz which now allows her to live in a home of herown, next to ours.

Liz can’t talk to us, but we talk to her. When wetold her she was moving to her own cottage, shesmiled more than we had ever seen before. She letsus know how she feels about things. We know we’redoing the right thing.

Remember, her name is Liz. The life she hasshould not be taken away from her.

Sincerely,

Bruce MacKenzie

Page 11

Remember, My Name is Liz

Liz MacKenzie in her own living room.

The Community ImperativeA statement against institutionalizing any person

because of a disability

March 2000, developed by self-advocates

The Center on Human Policy, Syracuse University, New York

In terms of Human Rights:

• All people have basic human and legal rights.

• These rights must not be taken away just because a person has a mentalor physical disability.

• Included in these basic rights is the right to live in the community.

In terms of education and support services:

• All people are valuable.

• All people have strengths and abilities.

• All people have the right to services in their lives that support thesestrengths and abilities.

• These supports are best provided in the community.

So:

To meet basic human rights and get the best services, all people, no matterwhat their abilities, have the right to live in the community.

Check out TCRC’s Web Site!www.tri-counties.org

Tri-Counties Associationfor the Developmentally Disabled520 E. Montecito Street, Santa Barbara, CA 93103

NONPROFIT ORG.U.S. Postage

PAIDSanta Barbara

CA 93101

Permit No 359Leadership

Contact your legislators and tell them theCommunity isImperative.

AssemblymembersDistrict 33

Abel Maldonado1302 Marsh StreetSan Luis Obispo, CA 93401(805) 549-3381(805) 549-3400 Fax

District 35

Hannah-Beth Jackson101 W. Anapamu St., Ste ASanta Barbara, CA 93101(805) 564-1649(805) 564-1651 Fax

District 37

Tony Strickland221 East Daily Dr., Suite 7Camarillo, CA 93010(805) 987-5195(805) 484-0853 Fax

District 38

Keith Richman, M.D.10727 White Oak, Suite 124Granada Hills, CA 91344(818) 368-3838(818) 885-3307 Fax

SenatorsDistrict 18

Jack O’Connell228 W. Carrillo St., Ste F0 Santa Barbara, CA 93101(805) 966-2296 (805) 966-3707 Fax

District 19

Tom McClintock 223 E. Thousand Oaks Blvd, #326Thousand Oaks, CA 91360(805) 494-8808(805) 494-8812 Fax