TriLine Newsletter - Summer 2002 - English

Tri-Line

LEADERSHIP

Tri-Counties Regional Center Newsletter July 2002

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

A MATTER OF PRIDE

Capitol Steps, Sacramento

The challenge for leaders is to live up to their fundamental responsibility as human beings: to treat others as themselves. — K N , A Higher Standard of Leadership: ESHAVAN

AIR

Lessons from the Life of Gandhi

It’s About Responsibility Edited from a speech by Jim Shorter, Executive Director, TCRC The Community Imperative Conference — Oakland, California January 2002

For those of us who are accustomed to legal theories, we think in terms of rights.

When rights are violated, there are legal remedies. But is it really about rights?

Mahatma Gandhi was once presented with a petition on universal human rights. His response 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 we mean by the term, responsibility?

Everyone who knows and understands The Community Imperative declaration has an obligation to act.

I think it means a responsibility for fairness and justice.

In the West you have heard people say, “You are your brother’s keeper.” Particularly here today, I prefer the East because they say, “You are your brother.”

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

First of all, my staff and I have embarked on a fiveyear effort to create community services and supports for everyone in our community that currently resides in a state-run developmental center. I hope that my colleagues will join me in this effort to define a time when everyone will be out of the institutional settings.

Secondly, for 20 years I’ve encouraged organized labor to be our partners in this effort, that we might liberate valuable professional resources now locked up in the state-run developmental centers.

For more than 20 years we have said capture the value of the state developmental center real estate before one more piece of land gets sold with the resources going to the state’s general fund, where people with developmental disabilities do not benefit.

Continued on page 3. . .

Page 2

The Community Imperative A Refutation of All Arguments in Support of Institutionalizing Anybody Because of Mental Retardation 1979 The Center on Human Policy Syracuse University, New York

In the domain of Human Rights: • All people have fundamental moral and constitutional rights.

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

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

In the domain of Educational Programming and Human 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 in securing optimum developmental opportunities, all people, regardless of the severity of their disabilities, are entitled to community living.

It’s About Responsibility continued . . .

For more than 20 years I’ve said that we are going to reach the objectives of community inclusion only if we have a plan to get there. Lo and behold, the Supreme Court agrees in its June 1999 decision in Olmstead v. L.C. and E.W, stating loud and clear that the denial of community placements to individuals with disabilities is precisely the kind of segregation that Congress sought to eliminate in passing the Americans with Disabilities Act.

For more than 20 years many of us have said we don’t need to have a community system and a staterun developmental center system. We need only one system to serve people with developmental disabilities.

Finally, our system has to have the basic common respect to include the people who are served in the planning 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 development centers. Each has moved into the community.

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

— BRIAN JONES

“It feels like a real family.”

— SUSAN COTTON

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

“I don’t blow up anymore.”

— MAXINE GLENN

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

In California, the system of communitybased services for persons with developmental disabilities is hurting.

Reimbursement rates for providers are too low to maintain trained staff. Many programs have been forced to close for lack of funds, and new programs are not 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 to an institution, but because appropriate services aren’t always available in the community.

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

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

Where do people live?

170,000 Californians with developmental disabilities living in the

community

3,700 Californians with developmental disabilities in the 7

state-run developmental centers.

That is why I have introduced Assembly Bill 896, which would establish the Lanterman Trust Fund. This fund would be capitalized through the sale or lease of developmental center grounds and buildings, and would be used exclusively for the development of communitybased housing and services to meet the needs of people with developmental disabilities Unfortunately, the fear of job loss on the part of workers in the developmental centers stopped the bill in the Senate Health and Human Services Committee and took the pressure off the Davis administration to negotiate the bill seriously.

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

Governor Gray Davis State Capitol Building Sacramento, CA 95814 Phone: (916) 445-2841 Fax: (916) 455-4633 Email:governor@governor.ca.gov

What does it cost?

$12,000 average annual cost of service for people with developmental disabilities living in the

$163,000 average annual cost of service for people with developmental disabilities in the 7

community

state-run developmental centers.

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What do direct care staff get paid? $15,800 $18,500 annual salary to care for people with developmental disabilities

$36,000 $52,000 annual salary to care for people with developmental disabilities

living in the community

living in the 7 state-run developmental centers.

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.

Who has moved between August 2001 and June 2002?

Mary has moved from: Lanterman Developmental Center — Pomona Population 654 Opened in 1927 302 Acres 117 buildings — 1,056,569 sq. ft.

Charlene, Shawna, Victoria, Alex, Tom, Trevor, Scott & Jacob have moved from: Charlene and Lisa West. Lisa is a TCRC Developmental Center Liaison whose job is to get people out of the Developmental Centers and moved into homes in the community.

Tri-Counties Regional Center is a leader in the effort to liberate people from Developmental Centers and move them back into homes in their communities.

Bringing our people home Lee, Brent, Thomas, Fidel, Daniel, Thomas, Edgar, Patricia , John & Jermaine have moved from: Porterville Developmental Center — Porterville Population 813 Opened in 1953 668 Acres 105 buildings — 1,137,514 sq. ft.

Fairview Developmental Center — Costa Mesa Population 805 Opened in 1959 Employs approximately 1,700 staff

Jane & Renee have moved from: Sierra Vista — Yuba City Population 34 (55 bed facility) Opened in 2000 52,000 sq. ft.

Shawn & John have moved from: Canyon Springs — Cathedral City Population 37 (63 bed facility) Opened in 2000 57,000 sq. ft.

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Charlene — Life in a Developmental Center The Community Placement Plan

By Terry Boisot weren’t faces like yours or mine — they were faces lost In February, I visited Charlene, a 45 year old woman and searching for something to do, a reason to be. Some living in a locked behavior unit in Fairview state-run of the people were screaming, and developmental center where more than pounding on walls and doors.

800 people live.

Charlene will be moving out of the I entered the unit once the door was behavior unit soon into her own home in unlocked by staff, and stood for just a supported living. The thought of a home is moment looking down a narrow and an exciting and frightening prospect for dimly lit hallway where fifteen or twenty Charlene. She hates it there in the developpeople with developmental disabilities mental center. I asked her how she felt were milling around. The lighting about leaving and she looked me square in seemed yellow. the eyes and said, “Thank God!” The walls were gray. Well, at least Charlene tells me her every move that is what I remember. They may have is watched there, her every action is been white — they just seemed gray, as Charlene at the developmental center monitored, and she has been physically did the tile floors. I could hear the heels abused by her roommate. There is little privacy and the of my boots click as I started to walk down the hall — screaming never ends. “It gets worse around the sound seemed to echo. lunchtime,” she said. “It never stops.”

There wasn’t a picture or a decoration on the wall Charlene won’t eat breakfast or lunch anymore — nothing that would reflect a person’s image. Did because the same thing is served every day. people know they had an image?

Charlene is also afraid to leave. Living in the community has been a nightmare. She has lived in From where I stood, psychiatric units, friends’ houses, cheap motels, group homes, hooked up with the wrong kind of men, and there weren’t any wandered the streets homeless. windows that would Charlene is preparing to move into an apartment give a person a view in an area she knows, with a roommate she likes. of the day. I looked Charlene will have 24-hour supports from supported living professionals, and a psychiatrist will work with around and wondered her to help her regain the self-esteem that disappeared if people inside knew decades ago. A dentist will give Charlene new teeth — how lovely the weather she doesn’t have any.

A job awaits her arrival, and she will go to the was outside. grocery store to buy the food she likes — when she Most everyone I saw and met was behaving in an wants. “I’m a good cook.” inappropriate manner, and asking inappropriate quesShe can hardly wait to move, she’s afraid to leave, tions of strangers that entered the hall where they stood. and worries about making poor choices again.

I was asked a few questions too, but don’t remember what they were. I remember the faces, though. They

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Charlene — A Window with a View The Community Placement Plan

By Terry Boisot It was June when I saw Charlene again. Her scheduled February move from Fairview Developmental Center was delayed after another resident scratched her so badly she spent about two weeks in the infirmary. Charlene was in a deep depression when she finally left. Recovering, she has been living in her own home in Paso Robles now for three months.

Charlene’s apartment is located just beneath golden rolling hills scattered with oak trees, lined with vineyards and country roads. When I drove up, Charlene and Laura (her supported living staff) were pulling into the parking lot, 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 new white sandals that she loves. She walked slowly, and slumped a bit.

With her own key to the small apartment, Charlene let me in, not staff. The first thing I noticed were the two kittens cuddled up together on the couch in the living room. I asked her what their names were. “The calico cat is Charlene with Laura Marsh of NCI, Laura. I have six plants bringing dreams to life. named Laura too.”

Laura is the name of the woman who supports Charlene in her new home during the week. They have become good friends and Charlene has reminders of that 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. It turned out too red; I feel like I’m an apple. I want it really blonde.”

I stood in the middle of the living room and took a good look around. The view from the window is beautiful and the shade of the oak trees looked inviting, as it was more than 90 degrees outside.

Inside looked like a real home. The couch and chairs were soft, the kitchen table had rounded corners, and carpet and throw rugs filled the apartment.

Most people wouldn’t know the interior was designed to keep Charlene safe during one of the violent seizures that has knocked out all of her teeth over the 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 some new teeth?”

“I have an appointment,” she said.

I sat at the kitchen table with Charlene as she wrote a check from her personal bank account. Imprinted on the upper left hand corner of her checks was “Praise the Lord.”

After she asked me how to spell “twenty,” we chatted for a while and talked about her upcoming trip to the Alpaca farm and about the medication her psychiatrist prescribed for her depression.

“I’d rather talk about my problems, and not be takin’ 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 Page 7

Accepting Responsibility for Change The Leadership Project The Tri-Counties Regional Center Leadership Project, a program of the Alpha Resource Center of Santa Barbara, is empowering families and people with developmental disabilities to accept responsibility for change in the developmental services system, now and in the future.

Missy Runnels and Senator Chesbro

Assemblywoman Hannah-Beth Jackson and Warren Mattingly

More than 50 years ago, the parent movement was inspired by parents who desired more for their children than an institution — the only option outside of their home. The parent movement brought to California the Lanterman Act, a part of California law that makes a promise to our children to provide them with supports and services which will enable them “to approximate the pattern of everyday living of non-disabled persons of the same age,” so they can “lead more independent and productive lives

in the community.”

Despite this promise, California is ill-prepared to support 170,000 children and adults with developmental disabilities in their communities, and now the state is facing a staggering $24 billion budget crisis.

Members of the Leadership Project have testified at legislative budget hearings and a legislative hearing on deinstitutionalization in California, and have been interviewed by the news media. Members have met personally with numerous legislators, the governor’s office, the director of the Department of Developmental Services and his five deputy directors. Their presence at the State Capitol is becoming commonplace, their faces known, 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.

Terry Boisot

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What members have to say The Leadership Project “It was a great experience for me when I went up to Sacramento for the Olmstead and budget hearings.

It gave me the opportunity to speak to legislators at both hearings. I got to tell them how important it is to me 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 only support staff, parents of those who use services, as well as those who use services themselves, come together as a unified group to testify before State Legislators. And they all did an excellent job!”

“Being involved with the Leadership Program has had a profound effect on my life. In the past few months I have learned so much by visiting our elected representatives, testifying on the last four public budget hearings, including the $52 million dollar cut to the 21 regional centers.

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

— Lori Boehm, Mother to Nicholas

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

Lobbying the Government

By Peter A. Stoner, self-advocate, writer and legislative advocate also asked questions. Then right in the middle of It was one heck of a great piece of lobbying by testimony a member of the committee said, people with disabilities from up and down “I think we’ve heard enough. You all know the State of California. what we have to do.” After that we were all On the eighth of April of this year the pleasantly surprised when the subcommittee Legislature of California held hearings on the voted to restore the funds that had been cut.

Governor’s proposed budget, which features The Chairwoman, Dion Aroner, said, “I cuts for community-based services for people don’t think you realized it yet, but you’ve just with disabilities. There were actually two won! Its only the first step, but take the victory and hearings dealing with the budget cuts. One was run with it.” before an Assembly subcommitee, and the other was before a Senate subcommittee.

Up until then most of us felt like we were just spinning our wheels, no pun intended, but this gave At the Senate subcommittee they politely us a real shot in the arm. We left Sacramento the listened to all of us testify, said, “Thank you very next day in a very good mood, but knowing we still much,” and that was the end of that. have a lot of work to do.

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

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Calling All Consumers The Leadership Project

By Stephen Day

“The Leadership Project is the biggest boost to Self-Advocacy in 25 years.” distant land, a place to visit to attend a conference Everything we’ve done up until now (the letter once a year (if we were lucky). writing, local legislative visits, and We knew that the State capitol and local community advocacy) is still very legislators were there, but they were important and effective, and we must too far away for us to reach. Now, continue to do it all.

Sacramento and the legislators there But it’s obvious that many major are becoming a neighbor, a familiar decisions and laws that adversely affect friend, and more importantly — a our lives are being made in place for positive REAL change.

Sacramento (often by people who We can, are, and will continue to don’t even know us at all). WE HAVE have an impact on the decisions that TO BE THERE so they can see the are made which affect our lives! Join affect of their decisions on faces, not us, and help us expand The Leadership budget figures. Then we will know Project. It’ll be one of the best things that we have done everything within Bob Butler of San Luis Obispo, Assemblyman our power to help ourselves and the Keith Richman, and Stephen Day of Santa Barbara you ever did – for yourself, and for countless others. people who help us.

We can and must be as vigilant as we need to be!

Stephen Day It’s the next logical step in advocacy. First you call, Consumer Advocate, TCRC then you write, then you BE THERE! The (805) 560-3757 x 11 Leadership Project makes that possible. email: TCSD@tri-counties.org To most consumers, Sacramento was once a far off

Calling All Parents The Leadership Project

By Keri Bowers

When I first became involved in this Leadership Project I had no idea how the movement would change my perspective and goals.

As an advocate and mother of a child having autism, prior to joining the Leadership team, I saw the world of disabilities through the eyes of my young son and others like him who had immediate needs for services and programs.

While I understood that the Individuals with Disabilities Education Act was never fully funded, and Page 10

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 children like him will potentially be denied choice and opportunities to live as vital members of our community when they reach adulthood. The system must change.

I have had the privilege to visit Sacramento on numerous occasions to meet with elected representatives, and testify at public hearings on budget issues.

I have learned that California’s 170,000 plus people with developmental disabilities are few in comparison to what Sacramento considers a large constituency.

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

Remember, My Name is Liz A letter from Liz’s father

By Bruce MacKenzie Dear Governor Davis,

Liz MacKenzie in her own living room.

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

Many programs needed by people with developmental disabilities to live, learn, grow and work in their communities have been targeted by the Governor for cuts.

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

My daughter’s name is Liz. Since she was born 21 years ago, Liz has always been an integral member of our family. She has two brothers and a sister. Up until high school, she was included in the regular classroom at her neighborhood schools. As a teenager, her body began to betray her: she lost her ability to swallow, which led to tube feeding; and she dislocated a hip, which required surgery. She found it a struggle to breathe or digest her food and to straighten her spine it had to be fused. Over the span of a couple of years, she went from a healthy kid 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, the state’s policies and practices are designed to force people like Liz into nursing homes and large staterun developmental centers. This was unacceptable to Liz and our family. With the help of our TriCounties Regional Center case management team, we designed a system of services and supports for Liz which now allows her to live in a home of her own, next to ours.

Liz can’t talk to us, but we talk to her. When we told her she was moving to her own cottage, she smiled more than we had ever seen before. She lets us know how she feels about things. We know we’re doing the right thing.

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

Sincerely,

Bruce MacKenzie

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The Community Imperative

Contact your legislators and tell them the Community is Imperative.

Assemblymembers District 33

Abel Maldonado 1302 Marsh Street San Luis Obispo, CA 93401 (805) 549-3381 (805) 549-3400 Fax District 35

Hannah-Beth Jackson 101 W. Anapamu St., Ste A Santa Barbara, CA 93101 (805) 564-1649 (805) 564-1651 Fax

A 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 mental or 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 these strengths and abilities.

District 37

• These supports are best provided in the community.

Tony Strickland 221 East Daily Dr., Suite 7 Camarillo, CA 93010 (805) 987-5195 (805) 484-0853 Fax

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

District 38

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

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

Senators

Tri-Counties Association for the Developmentally Disabled

District 18

520 E. Montecito Street, Santa Barbara, CA 93103

Jack O’Connell 228 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, #326 Thousand Oaks, CA 91360 (805) 494-8808 (805) 494-8812 Fax

Leadership

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