Tri-Counties Regional Center
Tri-Line A Regional Center Newsletter
Special Issue on
Legislative Issues April 2001
What’s Inside
Expect a Miracle — Believe by Suzanne Amstutz Imagine your husband has just died, your mother is dying, you have little money, and your baby is diagnosed with autism . . . how do you go on? Lisa Drew refused to wallow in self-pity. Instead, this strong, courageous woman chose to believe and expect a miracle for her precious, alive autistic son. She stepped out seeking support and services that eventually enabled her to help create a “team” for both she and her son, CJ. First, Lisa was referred to Tri-Counties Regional Center by a caring pediatricianHugh, Lisa and CJ celebrate their neurologist, Dr. Goldie, who diagnosed CJ. “team’s” success! This brought TCRC’s Dr. Steven Graff, Intake Psychologist and Mark O’Keefe, Service Coordinator on board. Additionally, over the past four years Cathi Nye, Caren Gross and Gill Surmont have become involved as CJ’s teachers. Furthermore, Hugh Griffith (or “papa”— as CJ calls him), has always been there as a supportive friend and now, CJ’s stepfather. The team was formed. All of these professionals communicate with Lisa and CJ on a regular basis. Lisa attends the Ventura Autism Support Group, autism seminars and conferences, and works at Rainbow Connection Family Resource Center, to give first hand knowledge to other parents trying to navigate through the system. “I think it’s meant a lot to Lisa to have a stable support base around her — to bounce ideas off of, for advice, and at times just to vent her frustrations.” says Service Coordinator Mark O’Keefe, “She is a very nice person, definitely a survivor, and CJ benefits from her relentless energies.” In the past, police officers were often called in to locate CJ when he ran away from school. His teachers could not leave him alone in outside activity groups. He was frequently on a leash. His concentration was poor, and CJ would not make eye contact with many people. His “team” put their heads together and came up with a combination of strategies that are working. No one takes the credit; in fact, they give it to each other. Also . . .they believe in CJ. Now they talk about his talent for reading, drawing and helping others in the classroom when they get stuck on their computer. They also talk about his humor — he loves to read out loud with a theatrical flair and gives lavish bows to everyone who receives an award at school ceremonies. Continued on page 3 side bar . . .
Success Stories • CJ Drew
Supports and Services • Medical Training for consumers • Consumer Satisfaction Report • Family Support Groups
Legislative Updates • Area Board IX Update • ARCA Update • TCRC Policy & Postcard Campaign • PAI/OCRA
TCRC Highlight • Straight from the Heart • Introducing Joseph Buchroeder
Plus . . . April May June 2001 Calendar of TCRC Events
ARCA Update
April 2001
(Association of Regional Center Agencies)
Events for people with developmental disabilities, their families, and the professionals who care for them.
by Toni Andre, TCADD Board Member By now I am sure all of you have heard about the State wide funding crisis we are facing this year. Over the last decade, the lack of adequate funding in all areas of our system has placed continued stress on regional centers and community service providers. But we have now reached the breaking point. Everyone, and especially those providing direct services to persons with developmental disabilities in the community, has managed to come up with creative and innovative ways to provide services in spite of increasingly tight budgets. They are to be commended for their efforts. However, all reasonable cost cutting measures have been exhausted, funding is stretched beyond its limit, and still funding is being withheld. This situation cannot continue. In January, ARCA’s Board of Directors sent a letter to the governor requesting restored funding for regional centers (as of this writing he has not responded to this request.) Other important documents approved at the January ARCA Board Meeting included “ARCA’s 2001 Legislative Platform” and “Planning for a Unified Developmental Disabilities Services System.” Copies of these documents are posted on ARCA’s website: www.arcanet.org. We must all take action in this time of great opportunity to change our system for the better. There are several ways you can help: Continued on page 4 side bar. . .
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Tuesday, April 3
Working for You: An Introduction to Assistive Technology 7-9 p.m., 6005 Capistrano Ave., Ste A, Atascadero RSVP to Parents Helping Parents, 549-8148
Saturday, April 7
TCADD Board Meeting 10 a.m. TCRC Santa Barbara 505 E. Montecito St., Santa Barbara
Monday, April 9
TCADD Consumer Services Committee 3:30 p.m., TCRC office, 3450 Broad Street, SLO
Tuesday, April 10
American Red Cross CPR Training 10 - 2 p.m., $12/person $13.50/book per organization Contact Maria Gonzalez at 370-8191 by March 27
Thursday, April 12
TCADD Vendor Advisory Committee 10 a.m., Call Kim Olson for location at 683-2145 Consumer Leadership Committee 1 p.m., 505 E. Montecito St., Santa Barbara
Saturday, April 14
Wednesday, April 11 TCADD Government and Community Relations Committee 6:00 p.m., TCRC office, 500 E. Esplanade Dr., Oxnard Thursday, April 19
Parents Helping Parents Coffee Klatch 10-11:30 a.m., 3450 Broad St. #111, SLO, 543-3277
Thursday, April 26
DSP Challenge Test Year 1 10:30 a.m., 602 Orchard St., Arroyo Grande Contact Letha Newberry, 560-3757 ext.16
The Rubicon Theatre Presents:
The Boys Next Door By Tom Griffin, on May 3-27, 2001 Directed by Rod Lathim This heartwarming, poignant play follows the antics and escapades of four men who live in a “group home” for the developmentally disabled. Jack, their compassionate but overworked social worker, deeply loves his charges, but sometimes dreams of a more “normal” existence. Filled with hilarity and humanity, The Boys Next Door makes us laugh and cry at our own foibles. The Boys Next Door is directed by Rod Lathim, founder of Access Theatre, and features an outstanding ensemble of actors including Dirk Blocker. Rubicon Theatre Company, 1006 E. Main St., Ste. 300, Ventura, CA 93001 Call State of the Arts ticketing at: (805) 667-2900 Ext. 1, Visa, Master Card and American Express accepted.
Grass Roots Day 2001 by Stephen Day Ever wanted to get politically involved (without turning into a politician)? . . . Well here’s your chance. Ever heard of Grassroots Day? (no it has nothing to do with farming, working in the fields, or anything to do with grass). It’s a way for ordinary people like you and me to talk with our legislators (the people we voted for back in November), to get their help with problems involving the State or Federal Government that we think need to be changed. What problems need to be worked on? Two problems: 1. The amount of money that programs receive to pay their staff and pay for space must to be increased, and; 2. We need Governor Davis to pay attention to our needs. Right now, as many of you know first hand, a lot of staff at the programs that serve consumers are leaving to find higher paying jobs, or they are just barely making enough money to get by. Some programs also don’t have enough money to buy the building or the space big enough for what they need (both of these situations are true with TCRC as well). Why is this happening? Because Governor Davis didn’t put ANY money in this year’s State budget to pay for either staff salaries or more space. “But you’ve always managed before? What’s different now?” Well, first of all, we can’t ask the state for more money (like we used to be able to do) and second, the staff salaries are now so low that consumers sometimes make as much or more money as the staff who support them. A job at McDonald’s now pays about as much as support staff receive. So the problem is there’s not enough money in the State budget, and the solution is getting Governor Davis to listen to us, believe that there’s a problem and then, Do Something About It! That’s where Grassroots Day comes in, and that’s where you can help. Grassroots Day is a day when all 21 regional centers (including TCRC) talk to their local legislators about this problem and strongly urge them to convince Governor Davis to do something to help fix the problem. This big “get together” is happening up in Sacramento on Wed., April 25, 2001. Your program is probably going to be at one of the rallies, so talk to your program staff if you want to go. If you can’t be there, you can always write letters, letters and more letters to Governor Davis — until he gets the message! There’s also going to be a ‘Legislative Breakfast’ at TCRC in Santa Barbara this spring. This is a chance for local legislators to learn about the problem before Grassroots Day, and it is also your best chance to talk with legislators and tell them how this problem affects you, your friends, and your staff. For more information about Grassroots Day, the Legislative Breakfast, or how you can help, talk to your program staff, your regional center service coordinator, or call: (800) 322-6994. ext. 270. Get involved. This is NOT about politics. This is about YOUR LIFE!
Expect a Miracle continued . . . On January 19, 2001, CJ (eightyears-old) was presented with a “Scholarship Award for Academic Excellence”. What is impressive about this? Everyone asked had the same response, “The change of his behavior in the past year — this has enabled CJ to focus on his school work and win this award.” CJ sang for me as I drove him around the neighborhood (he loves to ride in cars) and he drew a skyline of New York City and the Brooklyn Bridge on my notepad. CJ is an amazing young man who is a joy to be around. When I asked Lisa’s advice to others who are faced with difficult situations, she replied, “Take one second at a time, go with the flow . . . and believe in miracles”. Thanks to the entire “team” for an amazing story!
Imagine
Cecila Smith
Get your FREE Fishing License! Available at your Regional Center or Rainbow Connection
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May-June Day Facility Administrator/ DSP Training May 2, 3, 4, 9, 10 and 11, 2001, 9:30 a.m. - 4 p.m. Options, 800 Quintana Rd, Ste 2C Morro Bay OR May 18, 24, 25, 29, 30 and June1, 2001, 9 a.m. - 4 p.m. S.B. County Education Office, 4400 Cathedral Oaks Rd., SB Preregistration: Required Sponsored by Tri-Counties Regional Center For more information call: Morro Bay — Santa Lucia ROP (805) 473-4390 ext. 352 Santa Barbara — S.B. County ROP, 964-4711 TCRC at 560-3757 ext. 16
May 2001 Events for people with developmental disabilities, their families, and the professionals who care for them. Saturday, May 5
TCADD Board Meeting 10:00 a.m., Radisson Hotel, Esplanade Dr., Oxnard
Monday May 7-9
Residential Vendor Orientation Training 9:00 a.m., 5679 Hollister Ave., Goleta Contact Letha Newberry, 560-3757, ext.16
Tuesday, May 8
American Red Cross CPR Training 10 a.m. - 2 p.m., $12 per person $13.50/book/org. Contact Maria Gonzalez at 370-8191 by March 27
Thursday, May 10
TCADD Vendor Advisory Committee 10 a.m., Call Kim Olson for location at 683-2145
Thursday, May 10 5 CEU hrs.
AIDS, HIV, TB & Hepatitis, San Luis Obispo Holiday Inn Express, 1800 Monterey St., SLO Contact Letha Newberry, 560-3757, ext.16
Friday, May 11 6 CEU hrs.
Autism: Meeting the Needs in Residential Facilities Holiday Inn Express, 1800 Monterey St., SLO Contact Letha Newberry 560-3757 ext.16
Tuesday, May 15
AIDS, HIV, TB & Hepatitis, Goleta Valley Community Center, 5679 Hollister Ave, Goleta, 5 CEU hrs Contact Letha Newberry 560-3757 ext.16
Tuesday, May 15
Recertification Non Violent Crisis Intervention 1 - 2 p.m., $15.00 Must have valid certification in Non Violent Crisis Intervention, Contact Maria Gonzalez at 370-8191 by May 1
ARCA Update continued . . . • Visit the ARCA website at www.arcanet.org to check on current legislation relating to developmental disabilities. • Write your legislators and the governor requesting funding for our service system. Letters sent by individuals are very important. • Be visible and vocal. It is important that persons with developmental disabilities and their supporters get out for Grass Roots Day on April 25, 2001. Media coverage of these events will provide an excellent opportunity to educate our governor, legislators and the public. I remain excited and hopeful in spite of our current crisis because so many forces are coming together to work for positive change. Please feel free to email me at dtsandre@cs.com. Page 4
Wednesday, May 16 Autism: Meeting the Needs in Residential Facilities Goleta Valley Community Center, 5679 Hollister Ave, 6 CEU hrs Contact Letha Newberry 560-3757 ext.16 Friday, May 18
TCRC Legislative Awards Breakfast (see page 8 for details)
See side bar on page 4 for more informaton
DSP Training Year 1 S.B. County Ed. Office, and Options Morro Bay For further info call 560-3757 ext. 16 (SB) OR 473-4390 ext. 352. (MB)
Monday, May 21
TCADD Consumer Services Committee 3:30 p.m., TCRC office, 505 E. Montecito St, S.B.
Wednesday, May 16 TCADD Government & Community Relations Committee, 6:00 p.m., TCRC office,
Straight From The Heart By Letha Newberry, Community Relations Specialist Squeals of delight permeated the 2nd annual Valentine’s Day Arts and Crafts Fair held on February 8. The turnout was tremendous — close to 140 attended. Children enjoyed making their own valentines cards, playing games, getting their faces painted, watching balloons turn into animals, laughing at the funny clown and eating pizza. Meanwhile parents networked Santa Barbara’s Childrens’ Team Valentine’s with the parent support groups Day Arts and Crafts Fair exhibiting at the Fair. Those exhibitors participating included Independent Living Resources, Easter Seals, Adaptive Recreation Program, Special Olympics, and Family First. A big thank-you to the Girls Scouts, Little Caesars Pizza, and Calvary Chapel for their contributions and to all of those whose hard work made this event such a great success. This fair is the main team project for the year sponsored by the TCRC Santa Barbara Children’s Team. It has been so well received that parents request we do it annually and we will. See you next year!
Performance Contract By Ivy Turkington, Project Manager Thanks to all of you who attended TCRC’s Town Meetings last year! These meetings are part of our “Building Quality” effort, and we hope you find them as valuable as we do. We developed this series of eight annual community meetings to find out about the challenges you are facing and where TCRC needs to work better for you. We also want to talk with you about how TCRC is doing and the results of studies such as the Services Satisfaction and Outcomes survey. The information we bring back from the meetings — and we bring back all the information you give us — goes into our Strategic Planning process and ends up in our Strategic Performance Plan. Each year, we revise this document to better meet the needs of our community and our staff. This year, the Plan is focused around five main goals: 1. Self Determination Pilot Project; 2. Building Information and Communication Systems; 3. Community Resource Development; 4. TCRC Organizational and Staff Development; and 5. Building better systems for reporting on compliance with our regulating agencies. This is where we’ll be working over the next year — because these are the areas where you told us we need to work! This July, August, and September, we will once again ask you to review TCRC’s performance, and to tell us about community need areas. Your voice counts — and we hope to see you at our 2001 Town Meetings in each TCRC office area. We’ll let you know exactly when and where the meetings will be.
1,000 Rally for Higher Wages for Caregivers By Nedra Rhone, Times Staff Writer A crowd of about 1,000 filled the streets near the governor’s downtown Los Angeles office Friday to demand better wages for caregivers of people with developmental disabilities. People arrived as early as 9 a.m., many in wheelchairs or using crutches and walkers. They hoped the rally, in front of Gov. Gray Davis’ Spring Street office, would help persuade him and members of the Legislature to reevaluate funding for the Department of Disability Services in the May budget revisions. Demonstrators were concerned that the January budget did not provide enough funding to increase caregiver wage rates to a competitive market level, said Steve Miller, executive director of the Tierra Del Sol Foundation. The foundation serves individuals with developmental disabilities such as autism, mental retardation and severe cerebral palsy. Their protest followed a similar protest several months ago against the state and the county on behalf of workers in social service areas. “It is unsafe to have an entire system responsible for the care of California’s most fragile population predicated on entry-level employees working night and day,” Miller said. He said many employees are lured from the $8an-hour jobs as caregivers to the developmentally disabled into similar positions at schools and state institutions, or even jobs in fast-food restaurants. Continued on page 8 side bar. . .
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Local Family Support Groups If your support group is not listed (or incorrectly listed) please call Letha Newberry at 5603757, ext. 16, and let us know.
June 2001 Events for people with developmental disabilities, their families, and the professionals who care for them. Saturday, June 2
Santa Barbara United Cerebral Palsy Call for details 423 W. Victoria, Santa Barbara Contact Marty Kinrose, 966-1112
Family First
Saturday, June 9
TCADD Board Meeting 10:00 a.m. TCRC office, 505 E. Montecito St. Santa Barbara Batteries Not Included II with Guest speakers, James May, Founder of Fathers Network, Thomas Powell and Nancy Miller. For more information contact Polly Bleavins at Family First (805)347-2775 or ARC-SB 683-2145.
Thursday, June 14
TCADD Vendor Advisory Committee 10:00 a.m., Call Kim Olson for location at 683-2145
June 8-10
6th Annual California Statewide Self-Advocacy Conf. Doubletree Hotel, Sacramento (details below)
Monday, June 18
TCADD Consumer Services Committee 3:30 p.m., TCRC office, 505 E. Montecito St, SB
Diet Support Group
Tuesday, June 19
Meets 3rd Wednesday of the month to share information about gluten free, casein free diet, recipes, products and information at Alpha Resource Center, contact Debbie Hosseini 684-7364, or hosseini58@home.com
Psychotropic Medications 10:00-1:00 p.m. $5.00, Contact Maria Gonzalez at 370-8191 by May 1
Wednesday, June 20 TCADD Government and Community Relations Committee 6:00 p.m., TCRC office, 500 E. Esplanade Dr., Oxnard
Call for details Contact Patty Moore, 683-2145
Autism Society Support Group Call for details Contact Marcia Eichelberger 481-8074
Ventura Area
Camarillo/Simi Valley Downs Syndrome Association Call for details, 647-1147 10730 Henderson Rd., Ventura
Ventura County Autismo (Spanish Speaking) Call for details, 485-9892
Ventura County Autism Society (East Valley) 2nd Tuesday in Simi Contact Andrea Garcia, 527-5045
Ventura County Autism Society (West County) 2nd Friday in Camarillo Contact Stephanie Burgi, 312-8227 Continued on page side bar 7. . . Page 6
June 8-10, 2001, 6th Annual California Statewide Self-Advocacy Conference Friday-Sunday, June 8, 9, 10, 2001, Doubletree Hotel, Sacramento Cost: Hotel room costs and conference registration fees will be listed in the registration materials that will be mailed out in February. Registration fees include the costs of all conference meals from the Friday evening reception through the Sunday Morning breakfast. Registration materials will be available in February 2001. Keynote Speakers: Andrea Friedman, Self-Advocate, Television & Movie Actress, Los Angeles, CA and Debbie Robinson, Self-Advocate, Members, National Council on Disability, Plymouth Meeting, PA Sponsors: People First of California, Organization of Area Boards & Supported Life Institute Co-Sponsors: Alta California Regional Center, Association of Regional Center Agencies, Department of Developmental Services, Protection and Advocacy, Inc. and USC University Affiliated Program Contact: People First of California, c/o Supported Life Institute, 1010 Hurley Way, Suite 195, Sacramento, CA 95825, FAX: 916-567-1977, Email: sli@supportedlife.org
Safe and Strong By Irene Lucas TCRC consumers may sometimes be targets of crime, but with solid safety training they do not always have to be victims. Responding to the need to elevate the safety awareness and personal safety skills of our consumers, Tri Counties Regional Center is partnering with the Tri-Counties Justice and Disabilities Task Force to create the four part video series “SAFE AND STRONG, Strategies For Safety Training For People With Developmental Disabilities.” Safety in the Community, the first part of the four part series, is currently in production and expected to be released by the end of this June. Sexual Assault, Victim/Witness, What to Do/What to Expect will be completed by December 2001. The first two parts are funded by a grant from the California Department of Developmental Services provided to the Safe and Strong coalition — including TCRC, the Tri-Counties Justice and Disabilities Task Force, and Lucaswrites Educational Multi-Media Inc. Several critical areas of safe behavior will be presented in Safety in the Community, the first video, accompanied by printed curriculum, including • Confident Personal Bearing And Awareness Of Surroundings; • Be Ready To Call 911; • What To Say; • What To Do With Or Without Language; • ATM Awareness; • Safety On The Bus; • Stranger Danger—Strategies To Stay Safe; • If You Are Lost; • When And When Not To Show ID; • Never Go Anywhere With A Stranger; • Your Money Is For You. The accompanying printed curriculum will feature role play and key questions to ensure effectiveness of the safety training. Three major audiences for the video series are targeted: children 13 and above, receiving support in special education in the public schools; adults in community residential services, including group homes and independent living; and residents in developmental centers. A strong dissemination and implementation plan has been developed by TCRC and will feature an intensive “Train the Trainers” program. A powerful collaboration and commitment of law enforcement, social and human services, and persons with developmental disabilities provides excellent support. The series is based in part upon the safety training curriculum “Safety Zone Cops Talk” from the Portland, Oregon Police Bureau. Funding is being sought for the final two segments of the series, “Home Alone” and “Appropriate Interactions with Law Enforcement.”
Local Family Support Groups continued . . . Ventura County Downs Syndrome Call for details Contact Jane Bonn 656-5584
Special Parents Network 1st Tuesday at 6:30-8:00 p.m. 500 Esplanade Dr., Suite 500, Ventura or 1919 Williams, Suite 201, Simi Valley Contact 485-9643
United Parents Call for details Contact Ellen Linder, 523-8558
Post Polio Support Group 2nd Monday at Easter Seal Society, Ventura 7:00 p.m. Call for details, 647-1141
Learning Disabilities Association of Ventura County Parent Support Group Call for details, 643-7829
DAD’s Group For father’s of children with disabilities, Camarillo Contact Larry Valdez, 389-1790 or Shlomo Kreitzer, 482-6671
P.A.P.A.S. Meets every other month in Camarillo at the Airport, James Cowan Conference Center. Contact Maria Gomez 83-1919 or Rainbow Connection 664-3177, ext. 290
Santa Maria, Oceano, San Louis Obispo, Atascadero (North) Santa Maria Autismo (Spanish Speaking) Contact Claudia Romero 348-9246 Continued on page side bar 8. . .
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Local Family Support Groups continued . . . SLO Parents Helping Parents Parent-to-Parent Network Call for details, 543-3277
Down Syndrome Support Group Contact Silvia Viellard-Krug, 481-8074
Lompoc Parent Support Group Call for details Contact Polly, 347-2775
United Cerebral Palsy (Astascadero) Contact Eileen Walsh, 466-7266
1,000 Rally for Higher Wages for Caregivers Continued . . . “The state has chronically and repeatedly refused to fund community-based services,” said Miller, citing the 30-year-old Lanterman Act, which entitled developmentally disabled individuals to community-based care. Placing those institutions in jeopardy violates the law, he said. But state officials contend the $2.7 billion allocated to the Department of Developmental Services in the 2001-2002 budget as well as last year’s funding is a major improvement. “Last year, the governor allotted the biggest infusion of capital to the Department of Developmental Services . . . they have seen in over a decade,” said Byron Tucker, spokesman for the governor. Still, he said, funding for health services will be examined and revisions considered.
Medi-Cal Trainings for Consumers — Finally Here! By Stephen Day The Consumer Leadership Council’s long-awaited trainings on Medi-Cal for consumers are finally here. There will be three trainings (one for each County), and the first one is happening in San Luis Obispo on Saturday, May 19, 2001, from 9:00 a.m. to 4:45 p.m. in the ‘Good Neighbor’ room at Achievement House. Serious information about Medi-Cal will be presented in a fun way through a series of short skits using videos, role-plays, and audience participation. During the last segment, the audience will be able to ask the trainers questions on any topics that aren’t covered previously, and everyone who comes will get printed materials to take home with them. To ensure the accuracy of the information presented and to answer medically intensive questions, several local medical professionals will be there as consultants. The training is FREE and open to all consumers and their support staff. There will be several breaks during the day, and water and snacks will be provided. Lunch however, is NOT provided. You must bring your own sack lunch, because there are no nearby restaurants. This promises to be a fun and educational day for consumers, and is the only consumer-oriented Medi-Cal training in the state! Register early, as space may be limited! Don’t miss out! This is the only training in SLO County. For information or to register, call Stephen Day at 1 (800) 322-6994, ext. 220 or (805) 560-3757, ext 11. There will be similar trainings later this year in Ventura and Santa Barbara Counties.
Tri-Counties Regional Center and Area Board IX Present
st a f k a e r B s d r a w LegislatDive : FA , M 18, 2001 ATE
AY
Join us for breakfast and listen to a panel
including guest speakers Assemblywoman Dion Aroner, Chair, Assembly Human Services Committee and Nancy Gardiner, Chair, ARCA Legislative Committee. There will be time for your input too.
Cost: $5.00 (includes breakfast) Time: 8 a.m. to 11 a.m. pay at the door
TCRC Annex Conference Room 505 E. Montecito Street, Santa Barbara, CA RSVP by May 15, 2001—
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RIDAY
Call Jennifer Quackenbush at (805) 884-7270
Making Services Better! TCRC Satisfaction and Service Outcomes Surveys By Ivy Turkington, Project Manager The initial telephone calls By this time, almost 5,000 people with developmental disabilities and their families served by TCRC have been called about our survey and to check addresses and telephone numbers. Many thanks to all of you for your patience and your readiness to help the people making the calls! Your response and willingness to participate in the study, and to make services better for everyone TCRC serves, were wonderful. As you can tell, we’re working hard to make your opinion count! The Studies This year, TCRC is surveying in four main categories: supported living services, early intervention services, TCRC intake, and TCRC planning. As you might remember from last month’s article, two firms — XenologiX and the Center for Outcome Analysis (COA) — are calling or visiting people who receive services from TCRC to ask them how they feel about their services. All of the studies are going very well, thanks to the great response from all of you, but here’s a short report on each. Supported Living Services COA has completed 70 personal interviews with people who are receiving supported living services. The data is being entered into computers now and will be analyzed within the next few months. Early Intervention Services XenologiX has finished their telephone interviews of 161 families (125 English-speaking, 36 Spanish-speaking). COA has started interviews with 70 families receiving these services and expects to be finished soon.
TCRC Satisfaction and Service Outcomes Surveys continued . . . Thanks for your help! These surveys are all about “Building Quality” — TCRC’s commitment to its values of being responsive to consumers and their families and of organizational excellence. “Building Quality” depends on you and your family because only you can tell us if you are satisfied with your services. We all have a stake in ensuring that the system works. Understanding service outcomes for people and families is a big part of this goal — after all, this is why TCRC and other community service providers exist. Information generated through the “Building Quality” cycle helps everyone participate in planning, service coordination and authorization, implementation, needs assessment, resource development, and service assessment.
TCRC Intake XenologiX has finished 360 telephone interviews with 295 English-speaking and 65 Spanish-speaking consumers and families. COA will personally interview the 14 most and the least satisfied people from this sample. This second interview is designed to help TCRC understand what we’re doing right (that can be replicated for other families) and to understand what we’re doing wrong that can be changed and improved. TCRC Person-Centered Planning XenologiX has begun over 1200 telephone interviews and expects to be finished by May. Again, COA will personally interview the 14 most and the least satisfied people from this sample. As with the Intake Study, this second interview will tell us what we’re doing right and where we need to work to make our services better.
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Introducing Joseph Buchroeder, New Self-Advocacy Specialist for Ventura County By Suzanne Amstutz Last year, Stephen Day (TCRC’s Consumer Advocate) received a call from a consumer named Joseph Buchroeder. Joseph wanted to know about scholarships for consumers to attend conferences. It didn’t take long for Stephen to see that Joseph was very aware of consumer needs and willing to do all he could to make things better. Stephen seized the opportunity to recruit Joseph for the position of Ventura County Tri-Counties Regional Center Self-Advocacy Specialist. Joseph officially accepted the job in August 2000 and has been playing an active role every since. Joseph comes with experience. He has been involved in the selfadvocacy movement since 1996. At that time he was elected to the National Self Advocacy Board SABE (Self Advocates Becoming Empowered). What does Joseph do? Well, the job description goes something like this . . . assist, organize and maintain self-advocacy groups in Ventura County and visit day programs on a regular basis to promote and encourage self-advocacy. He is also setting up a computer lab at the Wagon Wheel program for consumer use. Joseph describes himself as “an educator and advocator for consumers.” He visits day programs to educate consumers on a variety of issues including safety, transportation, health and
Continued on page 11 side bar. . .
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The Organization of Area Boards and the Legislative Process By Barbara Murray, Area Board IX Area Board IX is part of a statewide system of 13 Area Boards, which were established by the Lanterman Act (Chapter 4, Division 4.5 of the Welfare and Institutions Code). They are mandated to: • Protect and advocate for the rights of persons with developmental disabilities; • Conduct or cause to be conducted information programs to increase public and professional awareness and eliminate barriers to integration; • Monitor the practices of publicly funded agencies for compliance with local, state and federal laws and pursue remedies of any noncompliance with such laws; • Conduct activities designed to improve the quality of services; • Promote the participation of primary consumers in all levels of the system and; • Plan, coordinate, and develop new and expanded program opportunities. The Organization of Area Boards (OAB) accomplishes these mandates through legislative advocacy. Advocacy goals are established by the OAB legislative platform, which establishes policy directives for legislative activities of the OAB. Toward this end, the OAB will focus its attention on specific legislative issues, which address the policies listed below. Legal Rights and Service Entitlement People with developmental disabilities have the same legal rights promised to all people under the United States and California Constitutions.. Budget Appropriations Appropriations for all services and supports must be sufficient to guarantee stable service delivery throughout the fiscal year for all eligible persons. System Design and Program Development The design of the developmental services system should guarantee uniform availability of appropriate services throughout the state, local determination of need, accountability by service agencies, and quality of service with funded options reflective of the informed choices of persons with developmental disabilities and their families. Allied Health Care California must establish and maintain a system which guarantees access to quality, comprehensive health care for all persons. Prevention In order to reduce the incidence of developmental disabilities and to ameliorate the impact of such conditions, a statewide prevention program including public awareness activities, data collection, and related services should be maintained.
Who should I call - PAI or OCRA? When I need help, should I call PAI or OCRA? If you are a regional center client, or need regional center services, your local clients’ rights advocate (CRA) is the first person to call for help. But you may call either OCRA (Office of Clients’ Rights Advocacy)or a PAI (Protection & Advocacy Inc.) office. If one office cannot help you, the staff person you work with will refer you to the other office, or to the organization best able to help you. OCRA’s toll-free number is 1-800-390-7032. How are CRA and PAI attorney services different? Because CRAs are near regional centers, they often know more about local resources. CRAs focus on advocating for individual consumers in a wide range of local problems. PAI attorneys also work with consumers, but they cannot help in as many issues as CRAs do. The attorneys more often deal with major litigation (like class actions), legislation, and statewide problems. What are OCRAs priorities? OCRA’s advisory committee set broad values and priorities for CRAs. Priorities may differ slightly from one regional center to the next. Normally, CRAs can handle a case if it has merit, if the situation relates to the consumer’s developmental disability, and if there are resources available. The major issues CRAs need to consider are: • Appropriate support and services, • Productivity, • Inclusion, • Integration, • Self-determination (especially when applying for generic services and coordinating between generic service agencies), • Eligibility for and access to services under the Lanterman Act, and • Discrimination based on disability. Also, CRAs must respond to priorities set by the regional center and other concerned people in the area each office covers. CRAs give priority to consumers from traditionally under-served communities. What are PAI’s priorities? PAI’s priorities are more specific. With input from the public and the disability community, PAI set up priorities for its work that are part of its Advocacy Services Plan. You may get a copy of PAI’s plan by calling 1-800-776-5746 or by logging on the PAI’s Web site at http://www.pai-ca.org/pubs/502301.htm.
Introducing Joseph Buchroeder Continued . . . wellness and legislative issues. Most importantly, Joseph teaches consumers how to speak up for their rights. He often uses guest speakers, letter writing campaigns, and pizza parties to enhance the experience. In addition, Joseph supports self-advocacy groups in Ventura County and is advisor to the Community Self Advocacy Group in Oxnard. Stephen had actually tried to recruit Joseph to serve on the TCADD Board of Directors and the Consumer Leadership Council. When a paid position became available, Joseph was the man he wanted. Recently, Joseph and Stephen attended a rally near Governor Gray’s downtown Los Angeles office. Approximately 1,000 people took part to demand better wages for caregivers of people with developmental disabilities. It was impressive. (see LA Times story on page 5) For more information on consumer advocacy, contact Joseph Buchroeder in the Oxnard office at 485-3177, ext. 269 or Stephen Day in the Santa Barbara office at 560-3757, ext.11.
Reprinted with permission from Protection & Advocacy, Inc., 100 Howe Avenue, Suite 185N, Sacramento, CA 95825. (800) 776-5746 Stephen Day and Joseph Buchroeder at LA Rally to support higher wages for Caregivers.
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Justice Task Force By Irene Lucas Representing consumers, advocates, parents, law enforcement, the criminal justice system and social service agencies, the Tri Counties Task Force on Justice and Disabilities is a powerful community coalition. Santa Barbara, San Luis Obispo and Ventura Counties are partners in the task force, formed in 1999. The Task Force was formed to respond to the high victimization rate of people with developmental disabilities, and to effect changes in the Tri counties. Objectives are fourfold. Crime prevention is the first goal. The task force is striving to promote self-advocacy among people with developmental disabilities to, reduce their risk of crime and sexual abuse, and violent victimization. To this end, the Task Force is a partner with of Lucaswrites Educational Multi-Media and TCRC to create a safety training video and printed curriculum series, “Safe and Strong, Strategies for Personal Safety for People with Developmental Disabilities.” Improving justice response is the second goal, to law enforcement and the criminal justice system about people with developmental disabilities. The treatment of consumers, prosecution of offenders against consumers are primary goals as well. Victim recovery and counseling is the third goal, to increase crisis services, victim/witness assistance and survivor counseling for our consumers. The fourth goal includes several objectives: collection of data to understand the high
Justice Task Force continued . . . rate of victimization; who is responsible for victimizing and in what settings, how the justice system responds, and how best to present future incidents of crime against consumers. A Medic Alert Emergency Response and Information System, is another project TCRC has contracted with MedicAlert to enroll consumers in a voluntary disability alert registry. Consumers will carry ID cards with critical emergency contact information and/or wear MedicAlert ID bracelets with the emergency contact information on the back. Local law enforceMarch Task Force Meeting — (Front Row l-r) Joan Petersilia (UCSB), Mary Whitley (TCRC); (Back Row ment had asked us to address l-r) Jim White (ARC), Jim Anderson (SB Sheriff their difficulty identifying our Dept), Irene Lucas (Lucaswrites), Courtney Winters (Planned Parenthood), Suzanne Amstutz (TCRC), consumers and identifying and Kirk Spry (VTC) and Vince Figueroa (TCRC) reaching emergency contacts. Not pictured: Bernie Schaeffer (TCRC) and Barbara Murray (Area Board IX) Educating the community is also a current project, with task force members speaking to local law enforcement and other groups to elevate their awareness and understanding of the unique needs of our consumers. Organizations which have been reached include the Rape Crisis Center, Santa Barbara Law Enforcement Chiefs Association, Ventura County District Attorney’s office, Association of Regional Center Directors, and Oxnard Police Department, among many others.
Check out TCRC’s Web Site! www.tri-counties.org
Tri-Counties Association for the Developmentally Disabled 520 E. Montecito Street, Santa Barbara, CA 93103
Special Issue on Legislative Issues
NONPROFIT ORG. U.S. Postage PAID Santa Barbara CA 93101 Permit No 359
Policy Brief Introduction “The State of California accepts responsibility for people with developmental disabilities and an obligation to them which it must discharge.” This policy brief describes California’s under-funded developmental services system and the challenges that face the system and the people it serves. Policy directions and legislative action are suggested to align the system with legislative intent and values as indicated in the Lanterman Act (Welfare and Institutions Code 4500 et seq).
Federal Funding
Social Services
Health Services
Governor
Legislature
Health & Welfare
Area Boards
Developmental Services
Regional Centers
Mental Health
OAB
Rehabilitation
Superintendent of Schools Education Department S.E.L.P.A.s
PRIVATE SECTOR
PAI
Developmental Centers (Institutions)
Service Providers
State Council
School Districts
Regional Centers: Local Determination Works “It is the intent of the Legislature that agencies serving the developmentally disabled shall produce more independent, productive and normal lives for the persons served.” (W&I Code 4501)
Community Based — Regional Centers, governed by volunteer boards of directors, meet the complex and varied needs of the highly diverse population by coordinating, linking and funding services and supports in their local communities for all people with developmental disabilities and their families.
Well Managed — Regional Centers provide services at low cost to tax-payers. On average, the cost to serve a person living in the community is over six times lower than the cost of serving someone in the State Developmental Centers.
Responsive and Centered on People and Families — We enable people to live as full and active community members. Ongoing third-party surveys of Tri-Counties Regional Center client and family satisfaction show a high degree of satisfaction with the services we provide.
“TCRC takes seriously its commitment to enhancing or improving the services it offers.”
A Great System — but a system in crisis! After a two-year review of the regional center system, the State Council on Developmental Disabilities concluded that the funding mechanism for regional centers bears little relationship to their mission.
7 Crisis Issues 1. The Capped Budget Limits Entitlement. 2. Local Control is Threatened: over-regulation of Regional Center processes detracts from real focus — outcomes for people and families. 3. Inefficient Use of Key Resources: over-use of state institiutions; under-use of state resources. (see ARCA Unified System repo, available from TCRC). 4. Regional Centers underfunded: unable to carry out mandate, especially in high cost areas (reports by Citygate and ARCA available from DDS and TCRC). 5. Service Provider rates underfunded: (including MediCal), jeopardizing peoples’ lives, community inclusion, and productivity. 6. Autism incidence: unanticipated growth identified in report commissioned by State legislature (report available from DDS and TCRC). 7. Urgently needed services are not provided: for months when Public Agencies deny services to Regional Center clients. Regional Centers can buy private substitiutes only after appeals of agency decisions are formally denied.
7 Recommendations for Legislators 1. Support Sunset of Welfare and Institutions Code 4791. 2. Oppose additional regulation of Regional Centers, support System Reform efforst to focus on outcomes.
Mail your recommendations today!
3. Co-sponsor and support AB 896 (Aroner). 4. Support ARCA’S proposed increased funding to Regional Center Operations. 5. Support increased rates for services providers, supplement MediCal rates. Support bills to augment rates in high-cost areas. 6. Support $75 million augmentation of Regional Center Purchase of Service Budgets to serve people with autism and their families. 7. Support AB 1191 (Longville) to allow Regional Centers to resolve disputes with public agencies over services needed for people and families.
Dear Governor Davis, “The State of California accepts responsibility for people with developmental disabilities and an obligation to them which it must discharge.” (W&I Code, 4501) Fulfill the promise of the Lanterman Act! California’s Developmental Services system is falling apart, and Regional Centers are too under-funded and over-regulated to help! Rebuild our system starting now by increasing funding to Regional Center Operations and Purchase of Services.
Quality services begin with a living wage!
Dear Governor Davis, “The State of California accepts responsibility for people with developmental disabilities and an obligation to them which it must discharge.” (W&I Code, 4501) Don’t wait ‘til the lights go out! California’s Developmental Services system is falling apart. Rebuild our system starting now with a 10% rate increase for community service providers.
Quality services begin with a living wage!
Don’t wait ‘til the lights go out — Act Now!
Three Easy Steps to Wake Up the Governor 1. Sign your name, and add a comment to the postcard.
Governor Gray Davis State Capitol Building Sacramento, CA 95814
2. Fill in your address on the three lines provided above the Governor’s address. 3. Put a 20¢ stamp on the postcard and mail it. OR bring the postcard to your service provider, and they will help you mail it.
Governor Gray Davis State Capitol Building Sacramento, CA 95814