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					                                              Monday Morning Memo
                                                  July 16, 2007
                                                      (916) 552-6619
             Gov Schwarzenegger declared May 2007 Drowning Prevention Month
                      please remember to be water safe all Summer
“Approximately 661 survivors of these accidents (near drowning) now receive lifetime services through the state Department
                           of Developmental Services’ regional and developmental centers.”

                                                Week in Review
The Monday Morning Memo is provided free to all advocates but we have a $25 voluntary subscription fee which includes an
  annual membership to The Arc of California and The Arc of the United States. Call or visit our MMM webpage to learn
Monday July 9, 2007
Kecia Weller, self-advocate from Los Angeles and member of the Tarjan Center Advisory
Committee, was elected President of the Los Angeles County Commission on Disabilities. She
will be installed as President next Wed, July 18th, 2007 at the Kenneth Hahn Hall of
Administration, 500 West Temple Street, Room # 140, in Los Angeles: the meeting is
scheduled from 1:00 PM to 3:00 PM. Congratulation Kecia.

Tuesday July 10, 2007
The Assembly Judiciary committee, chaired by Assemblymember Dave Jones, met and
passed SB 164 (Migden) Prenatal screening from our bill file – re-referred to Appropriations.

The American Association on Intellectual and Developmental Disabilities Environmental Health
Initiative had to cancel its teleconference, ―Detecting the Impact of Ethanol on the Fetus and
Understanding its Underlying Mechanism‖ with Cynthia F. Bearer, MD, PhD and will
reschedule to a later date to be announced. This lecture will present new evidence that
ethanol impairs brain development by interfering with how proteins move in the cell, and offers
a technique for identifying infants who’ve been exposed to ethanol in utero. Go to the Initiative
website at and click on the button that says next teleconference. There
you will find the update information and materials.

The Senate Human Services committee, chaired by Senator Elaine Alquist met and passed
AB 1184 (Lieber) Closure of Agnews Developmental Center: advisory task force and AB 1526
(Lieber) Housing for elderly or disabled persons and re-referred both to Appropriations.

The Senate Judiciary Committee, chaired by Senator Ellen Corbett, met and passed AB 18
(Blakeslee) Disabled persons: signature stamps. Program. AB 1192 (Evans) Developmental
services: consumer abuse registry. AB 1687 (Brownley) Confidential information and re-
referred to Appropriations. AB 34 (Portantino) Umbilical Cord Blood Collection was amended
and was re-referred to Judiciary.

                                                                                                 Monday Morning Memo
                                                                                                    The Arc of California
                                                                                              July 16, 2007, page 1 of 17
                                                                                       Tony Anderson, Executive Director
The Senate Judiciary Committee (Short Cause), chaired by Ellen Corbett, met a narrowly
passed by AB 910 (Karnette) Disabled persons: support and health care coverage and AB
1402 (Evans) Individual program plan meetings: recordation: appeals procedure information
and re-referred to Appropriations.

Wednesday July 11, 2007
The Senate Education Committee, chaired by Senator Jack Scott met from 8 AM to early
afternoon. That morning we were alerted by a couple of our Partners in Policymaking students
about their concerns with AB 1663 (Evans) – mainly the elimination of stay put provisions to
provide a services comparable to regional center while there is an unresolved disagreement
services between the parents and school. The bill passed through committee 5 to 0 and was
referred to Appropriations.

The Partners in Policymaking Collaboration met to discuss and review year two
implementation proposal as well as preparations for the next Partners session. See Project
Updates for details…

The Assembly Governmental Organization Committee, chaired by Assemblymember Alberto
Torrico met and passed SB 7 (Oropeza) Smoking in vehicles with minor passengers from our
bill file and re-referred to Appropriations.

Thursday July 12, 2007
We attended the Mental Health Developmental Disabilities Collaborative of the Association of
Regional Centers and the Mental Health Directors Association meeting in Sacramento co-
chaired by Joan Hoss, MHDA & Carlos Flores, ARCA Executive Director of San Diego
Regional Center. This collaborative has been meeting regularly for about 12 years addressing
system coordination issues for people with developmental and mental health disabilities. The
collaborative heard update reports from three major initiatives by the San Diego Regional
Center, Alta CA Regional Center, and the Far Northern Regional Center focused on mental
health services to their constituents. The collaboration is still trying to discern whether or not
Mental Health Services Act funding can be accessed to address the unique needs of people
who have both developmental disabilities and mental illness. Though there has been no
encouraging news on this matter it is still unresolved. We also met and consulted with Liberty
Health Care about the long standing barriers and issues concerning mental health and
developmental disabilities in California.

Friday July 13, 2007 – Saturday July 14, 2007
The California Conference of Executives of The Arc met all day at the Hilton in Irvine, Orange
County. The CCE agreed to begin a strategic planning process with the possibility of
conducting much of the planning activities online. We highlighted the NCE Summer Training
and six chapter executives planning to attend and some are bringing additional management
staff. While we discussed a variety of other topics, the status of the state budget, social
marketing, college of direct support, most of the day was spent discussing and deliberating on
our activities and position on AB 1427 by Assemblymember Paul Krekorian. In the end the
CCE voted to recommend to the Board of The Arc of CA to continue its opposition and draft a
new final letter opposing the bill.

                                                                                 Monday Morning Memo
                                                                                    The Arc of California
                                                                              July 16, 2007, page 2 of 17
                                                                       Tony Anderson, Executive Director
The Arc of California Board of Directors held their quarterly meeting from Friday July 13th – 4
PM through Saturday July 14th at the Hilton Irvine. On Friday the board highlighted several
bills from the bill file and new staff member, Jordan Lindsey, gave a status report on a couple
of bills that have required closer attention by the state office – namely AB 18, AB 1663, and AB
1427. The board passed the budget for next year and assigned the treasurer to conduct an
analysis of the current affiliation fee schedule for the state association. On Saturday we had
two excellent presentations by Leslie Morrison, MS, RN, Esq., PAI Director of Investigations,
and Elbert Johns Director of The ArcLink. Ms Morrison’s report on the recently released
report, ―Restraint & Seclusion in California Schools‖ motivated the board, through its Public
Policy Committee, to assign the report recommendations for consideration of legislative action
to prevent this type of disrespectful treatment of any student in our California Schools. Our
afternoon presentation by Elbert Johns was a webinar presentation of the new resource called,
―Roommates‖ designed to help people with developmental disabilities locate roommates to
maintain or secure their community living arrangements of their choosing. The roommates tool
was first developed to help Hurricane Katrina and Rita victims locate housing options
throughout the nation. The board was very engaged following the presentation recognizing the
important and much needed benefit this resource can offer our constituents while expressing
concerns for safety. The board discussed several upcoming conferences that we are involved
with and encouraged chapter participation and decided that the meeting in March will be
formatted as Governmental Affairs conference with visits to the legislators. This was President
Pat Heineke’s first meeting of her leadership term and by all accounts The Arc of CA is in
good hands.

                                     The Week Ahead
Monday July 16, 2007
The Senate Appropriations committee, chaired by Senator Tom Torlakson, will meet at 10 AM
in room 4203 and will hear the following bills from our bill file: AB 570 (Galgiani) Medi-Cal
reimbursement: a rate study bill for intermediate care facilities and AB 1427 (Krekorian)
Developmental services: training pilot program.

Nora Baladarian, PhD and Jim Stream, Executive Director The Arc of Riverside, will be
meeting with Ms. Nada Thabet, Nobel Peace Prize nominee known for her disability rights
work from Egypt, to discuss our work on issues of abuse of individuals with disabilities.

Today is the deadline for the request for nominations to fill three vacancies on the Advisory
Commission to the United States Secretary of Health and Human Services on the
implementation of the Vaccine Injury Compensation Program (VICP). The rules under which
the Commission was established call for nine voting members, and the Commission needs to
fill three vacancies. See the document at:
Tuesday July 17, 2007
The Olmstead Advisory Committee will hold a stakeholder meeting on ―Long Term Care
Rebalancing‖ from 10:00 am – 1:00 pm at 1500 Capitol Avenue, Training Room A
CALL-IN: Dial 1-866-703-6643 Passcode: 154837. The meeting will include an overview of
what ―rebalancing‖ is and what has our state done so far regarding this issue. We will discuss
                                                                               Monday Morning Memo
                                                                                  The Arc of California
                                                                            July 16, 2007, page 3 of 17
                                                                     Tony Anderson, Executive Director
strategies and barriers to rebalancing, as well as Medicaid Waivers, Deficit Reduction Act-
HCBS State Plan Option, and the State Plan.

The Arc of CA will participate in a status conference call with the College of Direct Support
national staff.

We will be participating in the planning meeting for the National Conference of Executives
(NCE) of The Arc Summer Training to discuss final preparations and logistics for our NCE
training conference from August 2nd – 4th in Anchorage Alaska.

Tuesday July 17, 2007 - Thursday July 19, 2007
Environmental Protection Agency (EPA) Children’s Health Protection Advisory Committee
(CHPAC) task groups and plenary sessions at 8:30 AM at RESOLVE, 1255 23rd Street, NW,
Suite 275, Washington, D.C. CHPAC advises the EPA on issues related to children’s
environmental health, including science and regulations. On the agenda for this meeting is a
discussion of what to do next regarding ―emerging chemicals of concern‖ and Children’s
Environmental Health Research Centers, among other topics. For more information, contact
Carolyn Hubbard at 202-564-2189 or at For more information
about this Committee, go to:

Wednesday July 18, 2007
We will participate in the Governor’s Committee on Employment of People with Disabilities,
Education and Employment Subcommittee meeting in Sacramento from 10:30am - 2:30 pm.

Friday July 20, 2007
We will be participating in meeting in Susanville, hosted by advocate Phil Parry, focused on
alternative sentencing strategies for people with Fetal Alcohol Spectrum Disorders in this
region. Participants will include a judge, the districts attorney, and other local professionals.

Friday July 20th – Saturday July 21, 2007
Along with our collaborative partners, Family Voices, Family Empowerment Centers, and the
Family Resource Center Network CA, we will be hosting our fourth Partners in Policymaking
session. This weekend session will focus on work, supported living, and will feature real life
advocacy in action as the Partners address access issues with the Director of the California
Hotel and Lodging Association. For details see the Project Status Report session below…

                                                 Action Alerts1
The Arc of California
AB 1427 (Krekorian) is scheduled today for the Senate Appropriations Committee. It is
unfortunate that only one of our recommended amendments were made (it was changed to
strike out the reference to using POS funds for Operations). This week’s Action Alert lists our
most recent letter on the bill following last weekend’s board meeting:

 To access the Action Alert system from The Arc of California website ( enter your zip code in the
“Contact Congress” federal box.
                                                                                                  Monday Morning Memo
                                                                                                     The Arc of California
                                                                                               July 16, 2007, page 4 of 17
                                                                                       Tony Anderson, Executive Director
July 16, 2007
The Honorable Paul Krekorian
The California State Assembly
State Capitol, Room 5135
Sacramento, CA 95814
FAX: 916 319 2143

Re: AB 1427 – OPPOSE

Dear Assembly Member Krekorian:

The Arc of California discussed our position on AB 1427 and at a meeting on July 14. The Board of
Directors voted to continue our oppose position.

We have studied the bill in depth and have made a diligent and good faith effort to work with you and with
the sponsors of the bill to reach agreement on amendments. That agreement has not been reached. We
believe AB 1427, if enacted, will seriously undermine one of the primary objectives of The Arc of
California – to improve the quality of the workforce serving individuals with developmental disabilities in

Our specific reasons for opposing the bill include:

    1. A pilot project to study the impact of training and wage increases on the workforce is not needed.
       Legislative focus on such a pilot project could actually delay implementation of critically needed
       training programs and wage increases for all direct support staff in the community.

    2. The premise on which the proposed pilot project is based is discriminatory and elitist. It rejects
       the importance of services currently being provided to tens of thousands of individuals as called
       for in their mandated individual program plans.

    3.    Local community-based organizations that are intended participants in the pilot project have
         studied the bill carefully and have concluded that the project, as proposed, is inordinately
         cumbersome and difficult to implement and has hidden costs that would be prohibitive.

    4. We believe that the costs to the state of implementing AB 1427 would far exceed the estimates in
       the bill.

    5. We are very concerned about the impact AB 1427 would have on the expansion of the use of the
       College of Direct Support (CDS) training program in California. CDS is a nationally recognized
       training program for direct support professionals. It is currently used by agencies in 23 states.
       Seven states have adopted it for state-wide use. The Arc of California brought the College of
       Direct Support to California to make it available to all local service provider agencies and all types
       of services. Already more than local 25 agencies are utilizing CDS here in California. What is
       needed now is for funds to be made available so that more agencies can implement CDS for their
       direct support staff. We believe that any funds available for staff training should be allocated
       specifically for this purpose and that it should be available to all agencies and all types of

    6. Further, we strongly recommend that wage increases for direct support staff be implemented as
       quickly as possible, without waiting for completion of training requirements.

                                                                                      Monday Morning Memo
                                                                                         The Arc of California
                                                                                   July 16, 2007, page 5 of 17
                                                                            Tony Anderson, Executive Director
      Lastly, the Arc of California has noticed the extent and the intensity of the opposition to AB 1427 in the
      community. This opposition is coming from consumers, family members and local agencies providing
      services. It is an overwhelming degree of opposition. As a grassroots, membership-based organization,
      we listen to and respect the wishes of those we are here to serve.

      For all of these reasons, we must oppose AB 1427.


      Tony Anderson
      Executive Director
      The Arc of California

The Arc of the U.S. – still current
Urge your Senators to Bring the Genetic Information Nondiscrimination Act (GINA) to a Vote
There are currently over 1,200 genetic tests that can be used to diagnose thousands of health
conditions and disabilities and the number is growing rapidly. Genetic information is
invaluable. It provides a key to the makeup of the human body that can be used to manage
health. However, genetic information can also be misused. Its misuse can put people at risk
for discrimination by insurance companies who might use genetic information to determine
eligibility or set premiums, or by employers who might use the information to make hiring or
promotion decisions or to determine a person’s eligibility for training programs. Cases of
genetic discrimination have already been documented in the United States. Many cases are
documented in a report located at:

                              From the Self-Advocacy Movement…
Executive Director of People First of California (PFCA) Joe Meadours has been going out and
meeting with people around the state. Last week I met with the Director of the California
Developmental Disabilities Council, Alan Kerzin. We are excited to Partner with the Council on
two new major projects. One of PFCA goals has been to educate youth, who attend Middle
school and High School, on the principles of Self Advocacy. The Tarjan Center, Executive
Director Olivia Raynor would like PFCA to also partner with them and the LA community on
youth mentoring. The other goal is to create a leadership summit to train self advocates on
what it takes to be a leader in your community.

If you would like more information on People First or how to get involved please call 916-552-

                                       Project Status Report
Partners in Policymaking
By Jordan Lindsey (funded by the State Council on Developmental Disabilities (SCDD))
The California Collaborative met this week to review and finalize the agenda for the upcoming
session focused on supported living and supported employment. This will be an extremely
informational session with best-practices and the path for the future being thoroughly
presented and discussed. Our supported employment piece will kick off with Mike Callahan
                                                                                           Monday Morning Memo
                                                                                              The Arc of California
                                                                                        July 16, 2007, page 6 of 17
                                                                                 Tony Anderson, Executive Director
from Mississippi, a widely recognized pioneer in the development of supported employment
approaches. Dale Dutton will continue the training with a look at the spreading trend of
people with disabilities creating microenterprises as an income option. His daughter, Dusty,
will then join a panel of four other self-advocates (Lisa Cooley, Tracey Mensch, Monique
Harris, and Willie West) who are all running microenterprises of their own or were heavily
involved with the SB 1270 report. Alan Kerzin, Director of the State Council on
Developmental Disabilities, will be facilitating that panel as well as providing insight into the
impact that the SB 1270 recommendations will have on employment opportunities.

On our second day we will be taking a look at supported living and the issues, challenges, and
exciting possibilities surrounding it. Claudia Bolton from North Star Services will be our main
presenter of the day and will bring collaborators to give a rounded perspective of the different
types of living arrangements possible.

On top of our training the Partners will also have the exciting opportunity to present their
concerns and solutions regarding inaccessible bathrooms in hotels to Jim Abrams, Director of
the California Hotel and Lodging Association, as well as the general manager of the
Hawthorne Suites. For many of our participants this will be their first time directly advocating
for change on an is, however, sure to not be their last.

California College of Direct Support
By Sack Keophimane (funded by SCDD)
We gave a presentation on the College of Direct Support to the Executive Director, Diana
DeRodeff, and the program managers of Inalliance, Inc. Inalliance provides job training,
placement and independent living support to adults with developmental disabilities. Diana was
interested in using the online training program for her staff development. The management
team of Inalliance were impressed with the learning system as well as supportive with The Arc
of CA/CDS workforce initiative. We're happy to report that Lanterman Regional Center and
San Andreas Regional Center started their pilot project in July and we continued to get names
of agencies interested in using the program. We also continued to reach out to the regional
centers that have indicated an interest in the pilot project and working together with their
representatives to set up a time and date to meet and discuss the project.

The following centers are still working with us to design their local implementation: Redwood
Coast Regional Center, Golden Gate Regional Center, Valley Mountain Regional Center, Kern
County Regional Center, Tri-Counties Regional Center, Far Northern Regional Center,
Regional Center of East Bay, San Andreas Regional Center, and North Los Angeles Regional
Center, East Los Angeles Regional Center, and San Gabriel/Pomona Regional Center.

Regional Centers in current live implementation: (1) North Bay Regional Center, (2) Central
Valley Regional Center, (3) Westside Regional Center, (4) Alta CA Regional Center, (5)
Lanterman Regional Center (6) San Andreas Regional Center.

                                      Upcoming Events
July 24, 2007
Deadline for the request for comments on proposed revisions to the Medicare Program’s
Medicare Advantage and Part D Prescription Drug contract provisions. Based on provisions in
                                                                                  Monday Morning Memo
                                                                                     The Arc of California
                                                                               July 16, 2007, page 7 of 17
                                                                        Tony Anderson, Executive Director
the Medicare Prescription Drug, Improvement, and Modernization Act of 2003, the former
Medicare + Choice program became the Medicare Advantage Program and the Part D drug
program came into being. CMS is trying now to clarify provisions related to contract
determinations for Medicare Advantage organizations (those organizations that provide health
plan options under Medicare, including drug coverage) and Part D prescription drug plan
sponsors (stand-alone plans). Some of the clarifications would eliminate the reconsideration
process for review of contract determinations, revise the provisions regarding the appeals
process, make clear the civil money penalties, and enhance beneficiary protections when a
plan is terminated. See the document at:

July 24, 2007
Deadline for the request for comments on proposed technical changes and clarifications to the
Medicare Prescription Drug Benefit. The prescription drug benefit is authorized in the Medicare
Prescription Drug, Improvement, and Modernization Act of 2003. Some of the clarifications
address Part D sponsors providing access to home infusion pharmacies and timely delivery,
providing access to network long-term care pharmacies, and a refined definition of what may
be included in calculations of beneficiary cost sharing by Part D sponsors. See the document

August 2nd – 5th 2007
The National Conference of Executives of The Arc Summer Leadership training will be in
Alaska this year and will feature workshops by Carrot Culture on the ideas outlined in the book,
The Carrot Principle, How the best managers use recognition to engage their people, retain
talent, and accelerate performance. To view more information on the Carrot Principle visit their
site at:

October 3rd – 5th 2007
The 21st Annual Supported Life Conference in Sacramento, CA. This year’s conference will
feature keynote speakers: Al Condeluci, UCP of Pittsburgh, Pennsylvania - Nationally-known
advocate and catalyst for building community: Sue Rubin, Self-Advocate, Whittier, California -
Wrote the 2004 Academy Award Nominated documentary ―Autism is a World‖: Joanne Knapp-
Philo, CIHS, Sonoma State Univ., California - Director of National Head Start Family Literacy
Center; new 2006 book ―Language to Read the World.‖ For more information on this
upcoming conference visit the website at:

October 7th – 9th 2007
The 2007 National Association of Councils on Developmental Disabilities National Conference
will be in San Diego this year, at the Marriott in Mission Valley. The Conference is hosted by
the California State Council on Developmental Disabilities and the Title of the Conference is
―Sailing Together into the Future.‖ For more information on Registration and the Conference,
please contact the SCDD at 322-8481, or email

October 11th - 13th, 2007 (October 10th topical conference for NCE)
The Arc's 56th Annual National Convention at the Hyatt Regency Dallas, 300 Reunion
                                                                               Monday Morning Memo
                                                                                  The Arc of California
                                                                            July 16, 2007, page 8 of 17
                                                                     Tony Anderson, Executive Director
Boulevard, Dallas, Texas, USA 75207 (214) 651-1234 Click here for Exhibitor Information.
Click here for information on The Arc's 2007 Awards. (All nominations are due by June 15,
2007). The 2007 Convention will include: The Arc’s National Board of Directors Meeting, NCE
President’s Reception & Awards Dinner, Exhibit Hall, Workshop sessions for Family,
Leadership, and Advocacy tracks, What’s Happening in Washington?, Research & Prevention
Luncheon, the President’s Horizon Club Reception, and even a scheduled trip to the Texas
State Fair!

October 29, 2007
Save the Date: The Association of Regional Center Agencies will be hosting a conference on
End of Life Compassionate Care for people with developmental disabilities in Sacramento.
The conference planning committee consists of members of the Coalition for Compassionate
Care Developmental Disabilities Task Force, ARCA, The Arc of CA, and the Dept of
Developmental Services.

                             Recently Released Reports, Studies, etc.
Since the board of directors of The Arc of CA recently had a presentation on the
“Restraint...” report we are repeating our listing of it in this week’s MMM:

Restraint & Seclusion in California Schools: A Failing Grade by Protection and Advocacy,
Inc. “Oakland, CA- A 10-year old boy with significant disabilities was bound to his wheelchair and left in the school van
on two separate days. One school built a locked seclusion room where an 8-year old boy with psychiatric and developmental
disabilities was routinely locked away. Other children were dragged by their teachers into seclusion areas and then
barricaded from leaving. These are some of the more serious complaints that in 2006 led PAI to open a full-scale
investigation into the extent of dangerous and prohibited restraint and seclusion practices currently in effect in the California
school system. "This investigation starkly revealed both the failure of school personnel to comply with existing regulations
and the failure of current law to sufficiently regulate these dangerous practices," stated Leslie Morrison, author of the report.
Attorney Morrison, head of PAI's Investigations Unit, further explained that over the years, with insufficient training and
oversight, the use of restraint and seclusion in primary and secondary California schools has become routine and is no
longer reserved for situations posing imminent risk of harm. The 61 page investigation report, entitled "Restraint &
Seclusion in California Schools: A Failing Grade," included extensive review of records; on-site inspections in a rural school
district in the northeast part of the state, a Bay Area school district and a non-public school in the Los Angeles area; victim
and witness interviews; and consultations with experts in restraint and seclusion. Morrison and her investigations team made
numerous recommendations for improvements that will bring the practices of schools-based behavioral restraint and
seclusion in line with those applied in other settings. This includes prohibiting the use of seclusion; limiting the use of
restraint to the most dire circumstances; ensuring compliance with state laws and regulations limiting the use of emergency
interventions; and ensuring that school personnel proactively address serious student behavior problems through individual
assessments. The report can be downloaded from the organization's website: or For print copies, contact PAI's Oakland office at (510) 267-1200.”

                                                    News Articles
The other story from a 'Pillow Angel'
Been there. Done that. Preferred to grow.
The Seattle Post-Intelligencer Sunday, June 17, 2007
By Anne McDonald
Three years ago, a 6-year-old Seattle girl called Ashley, who had severe disabilities, was, at her parents'
request, given a medical treatment called "growth attenuation" to prevent her growing. She had her
uterus removed, had surgery on her breasts so they would not develop and was given hormone
treatment. She is now known by the nickname her parents gave her -- Pillow Angel.
                                                                                                      Monday Morning Memo
                                                                                                         The Arc of California
                                                                                                   July 16, 2007, page 9 of 17
                                                                                            Tony Anderson, Executive Director
The case of Ashley hit the media in January after publication of an article in a medical journal about her
treatment. It reappeared in the news recently because of the admission by Children's Hospital and
Regional Medical Center that the procedures its doctors had performed to stop Ashley from growing and
reaching sexual maturity violated state law. In Canada (as in Australia), a child can be sterilized only
with the consent of a court. At the time of the initial publicity about growth attenuation, Ashley's
parents wrote on their blog: "In our opinion only parents of special needs children are in a position to
fully relate to this topic. Unless you are living the experience, you are speculating and you have no clue
what it is like to be the bedridden child or their caregivers." I did live the experience. I lived it not as a
parent or caregiver but as a bed-ridden growth-attenuated child. My life story is the reverse of Ashley's.

Like Ashley, I, too, have a static encephalopathy. Mine was caused by brain damage at the time of my
breech birth. Like Ashley, I can't walk, talk, feed or care for myself. My motor skills are those of a 3-
month-old. When I was 3, a doctor assessed me as severely retarded (that is, as having an IQ of less than
35) and I was admitted to a state institution called St. Nicholas Hospital in Melbourne, Australia. As the
hospital didn't provide me with a wheelchair, I lay in bed or on the floor for most of the next 14 years.
At the age of 12, I was relabeled as profoundly retarded (IQ less than 20) because I still hadn't learned to
walk or talk. Like Ashley, I have experienced growth attenuation. I may be the only person on Earth
who can say, "Been there. Done that. Didn't like it. Preferred to grow." Unlike Ashley, my growth was
"attenuated" not by medical intervention but by medical neglect. My growth stopped because I was
starved. St. Nicholas offered little food and little time to eat it -- each staff member had 10 children with
severe disabilities to feed in an hour. That was the roster set by the state and accepted by the medical
profession. Consequently my growth stopped shortly after admission. When I turned 18, I weighed only
35 pounds. I hadn't developed breasts or menstruated. I was 42 inches tall.

My life changed when I was offered a means of communication. At the age of 16, I was taught to spell
by pointing to letters on an alphabet board. Two years later, I used spelling to instruct the lawyers who
fought the habeas corpus action that enabled me to leave the institution in which I'd lived for 14 years.
In the ultimate Catch-22, the hospital doctors told the Supreme Court that my small stature was evidence
of my profound mental retardation. I've learned the hard way that not everything doctors say should be
taken at face value. After I left the institution, an X-ray showed that I had a bone age of about 6, a
growth delay almost unheard of in an 18-year-old in the developed world. I was not only tiny but lacked
any secondary sexual characteristics (a significant difference from people with naturally small stature). I
was a legal adult, but I couldn't see over a bar, much less convince anyone to serve me a drink. I didn't
see small stature as desirable. My new doctors said that presumably I had the growth potential of a 6-
year-old, so my new caregivers and I worked on increasing my size. My contribution was to eat
everything I was offered. It worked. I started growing immediately, reaching a final height of 5 feet and
weight of 120 pounds. That is, I grew 18 inches after the age of 18. Along the way I lost my milk teeth
and reached puberty. At the age of 19, I attended school for the first time, eventually graduating from
university with majors in philosophy of science and fine arts. "Annie's Coming Out," the book about my
experiences that I wrote with my teacher, was made into a movie (Best Film, Australian Film Institute
Awards, 1984.) …No child should be presumed to be profoundly retarded because she can't talk. All
children who can't talk should be given access to communication therapy before any judgments are
made about their intelligence. Ashley's condemned to be a Peter Pan and never grow, but it's not too late
for her to learn to communicate. It's profoundly unethical to leave her on that pillow without making
every effort to give her a voice of her own.

                                                                                         Monday Morning Memo
                                                                                            The Arc of California
                                                                                     July 16, 2007, page 10 of 17
                                                                               Tony Anderson, Executive Director
When Discipline Starts a Fight
Wall Street Journal July 9, 2007
Pressured to Handle Disabled Children, A School Tries Restraints, 'Isabel's Office'
When Eva Loeffler walked into her daughter Isabel's classroom at Waukee Elementary School on Dec.
15, 2004, she says a male guidance counselor was trying to contain the shrieking 8-year-old by wrapping
his arms around hers in a restraint hold. Isabel, suffering from autism and other disabilities, had a
history of aggressive behavior, but Mrs. Loeffler had never seen her so agitated. Her eyes were glazed
and her face was red. "She was like a wild animal," says Mrs. Loeffler, who, at the time, felt sorry for
the counselor who had to deal with her daughter in such a state. That sympathy waned as Mrs. Loeffler
and her husband learned all the measures the school district used on Isabel. These included restraint
holds by three adults at once and hours in a seclusion room that teachers called "Isabel's office." There
the girl sometimes wet herself and pulled out her hair, according to documents filed in a 2006
administrative-law case the Loefflers brought against the school district.

In March, the presiding administrative-law judge ruled that the district had violated federal law by
educating Isabel in overly restrictive settings and failing to adequately monitor its methods. The district
has appealed. Its lawyer, Ronald Peeler, says it used "established educational principles" in addressing
Isabel's problems, and made adjustments when its discipline wasn't working. "We are not dealing with
an exact science here," says Mr. Peeler. As public schools come under pressure to teach more children
with behavioral disabilities, the use of restraint and seclusion has become a contentious issue. Faced
with laws that make it more difficult to expel or suspend misbehaving special-education students,
educators say they need to use harsh tactics sometimes to protect other children and teachers. The
danger comes when schools turn methods designed for extraordinary circumstances into routine
disciplinary tools. The result can be a vicious cycle of punishment and rebellion, hurting the very
children who were supposed to benefit from attending a mainstream school. Some states are taking
action. Last year, Michigan barred schools from restraining students by holding them face-down on the
floor. The move was sparked by the case of Michael Renner-Lewis III, an autistic 15-year-old who died
in 2003 after being restrained in that manner at a Kalamazoo-area high school. This year, Kansas and
Connecticut have stepped up reporting requirements for school districts using restraint or seclusion…

Is Autism Declining
The Huffington Press, July 12, 2007
By David Kirby
For quite some time, the American government, health establishment and mainstream media have
repeated the mantra that mercury-containing vaccines were eliminated "several years ago," yet the
number of autism cases continues to climb -- the inference being that injecting organic mercury into
newborn babies has now been proven to be 100 percent safe. The problem, though, is that there is no
proof that mercury was eliminated "years ago" and, more importantly, now there are signs that autism
rates among the youngest children might actually be falling. On Wednesday, the California Department
of Developmental Services released data from the second quarter of 2007, showing that the number of
three- to five-year-olds with autism in the state system increased by 169 children over the first quarter of
2007. This is about the same quarterly increase seen in the state over the past several years. But it turns
out that a private citizen has paid the state each quarter to analyze the autism numbers according to year
of birth, and not just by age group. State law requires that such privately funded analyses be made
available to anyone else who asks for it. So I asked for it. What I got was rather interesting.

                                                                                       Monday Morning Memo
                                                                                          The Arc of California
                                                                                   July 16, 2007, page 11 of 17
                                                                             Tony Anderson, Executive Director
After breaking down the current data among three- to five-year-olds by year of birth, you notice that the
number of cases among children born in 2002 (who are now roughly five years old) and 2003 (or
roughly four years old) continued to go up. But among those kids born in 2004 (who are now turning
three years old) the number of cases has fallen, as compared to kids born in 2003. For example, at the
midpoint of 2006, there were 2,250 children born in 2001 (or roughly, five-year olds) with autism
counted in the system. By the same period of 2007, the number of kids with autism born in 2002 had
risen to 2,490, an increase of 240 children, or 10.7 percent. Among "four year olds," the increase was
even more dramatic, with 326 more kids diagnosed with autism midway in 2007 than in 2006, a startling
jump of 17 percent. But among the very youngest kids counted, the story was the opposite. At the end
of June 2006, there were 688 children born in 2003 with autism diagnoses. This June, the number of
kids born in 2004 with autism was 632, a statistically significant drop of 56 children, or 8.1 percent less
than last year at this time. This marks the second drop of its kind among the youngest children in
California (which only tracks so-called "full spectrum" autism, and not milder forms of the disorder). It
follows the first quarter of this year, when 251 children born in 2004 entered the system, compared with
264 kids born in 2003 who were enrolled in the first quarter of 2006 - a modest decline of 13 students, or
4.9 percent.

…Are autism rates dropping? I would never say they are for sure. We simply have to wait and see. But
there are tantalizing hints that autism is indeed starting to decline among the very youngest children,
born and vaccinated more recently, when mercury was transitioned out of most shots. Which brings us
to the, mercury was removed "several years ago" mantra, whose best retort is probably: "Says who?"
According to the Boston Herald, the last mercury-containing shots given to U.S. children expired back
in 1999. The Washington Post, meanwhile, put the date at 2001, the FDA said it was 2002, the Institute
of Medicine and the Immunization Action Coalition said 2003, and the Council of State Governments
claimed it was "early 2004." Who's right? We may never know. But we do know that companies were
still manufacturing mercury-containing shots for American kids in 2001, and most vaccines have a shelf
life of about two years. And we know that 90 percent of flu shots given to pregnant women and infants
still contain the full amount of mercury today. The number of California kids born in 2004 who have
autism is, by any measure, still too high. True, we don't know how many of those 632 children were
exposed to mercury in routine vaccines overseas, or flu shots here at home. But with numbers this lofty,
it's highly unlikely that thimerosal alone was responsible for the entire autism epidemic. If mercury is
but one cause of autism, there must be other causes as well. Let's say that autism cases among three-
year-olds fall by 10 percent or so by year's end. Could thimerosal be the cause of 10 percent of autism
cases? That would still mean tens of thousands of Americans injured by mercury in their vaccines.
Moreover, identifying the cause in just 10 percent of cases might help us discover what is causing the
other 90 percent. But I am writing way ahead of myself here. Regardless of one's position on the
mercury-autism contretemps, I hope everyone can agree that an actual drop in the numbers, no matter
what the cause, would provide a welcome respite from the endless chorus of grim news we all seem to
face these days.

No 'Smoking Gun' Found In Dept. Of Mental Retardation Report
The Day (Connecticut) July 6, 2007
By Kenton Robinson, Columnist, Social Services Reporter
A review of the deaths of 202 persons under the care of the state Department of Mental Retardation
released Thursday found “no smoking guns” but did show there is need for better oversight. The review,
conducted by the state Fatality Review Board and covering the period from July 1, 2005, to June 30,
                                                                                      Monday Morning Memo
                                                                                         The Arc of California
                                                                                  July 16, 2007, page 12 of 17
                                                                            Tony Anderson, Executive Director
2006, found most of the deaths were due to such natural causes as heart attacks, cancer and pneumonia.
But the board also found, in an investigation of 10 of the deaths, that eight of those deaths were due to
neglect. In three cases, clients choked on food or inedible objects; in four, medical care was not
obtained in a timely manner; and in one, the client received poor care in a nursing home, the report said.
The board found “nothing that looked like a smoking gun or evidence of systemic bad care,” said James
McGaughey, executive director of the Office of Protection and Advocacy for Persons with Disabilities
and chairman of the fatality board. “On the other hand,” he said, “there were in some cases failure of
individuals to do their job, and some a general lack of clarity about the responsibilities of the nurses” as
well as poor communications between staff and nurses. Those faults, McGaughey said, “resulted in
delays in delivering adequate medical care, and that's an issue that DMR needs to work on.”

As a result, the board recommended the agency takes steps to “clarify nurses' roles, improve
communications and coordination between health care and residential service providers, and develop the
capability for forensic testing of portable life support equipment.” Overall, the board's findings were
“consistent with experience from previous years in Connecticut, and are also generally consistent with
mortality data for the overall population.” McGaughey said DMR has taken the cases very seriously.
“The upshot was a big summit meeting last summer,” he said, “where various representatives of various
agencies recommitted to training their staff and having ongoing reminders to staff for individuals that
have these risky behaviors, so there's a constant awareness, to make sure we've got this covered.”

                                      Funding Opportunities
HHS - Department of Health and Human Services Office of Public Health and Science
2007 Hospital Preparedness Program Modification 2

HHS - Department of Health and Human Services Office of Public Health and Science
2007 Healthcare Facilities Partnership Program Modification 2

USDOJ - United States Department of Justice Office of Justice Programs
Office of Juvenile Justice Delinquency Prevention OJJDP FY 2007 Juvenile Sex
Offender Treatment Program Development and Capacity Building Grant

USDOJ - United States Department of Justice Office of Justice Programs
Office of Juvenile Justice Delinquency Prevention OJJDP FY 2007 Internet Crimes
Against Children Expansion-Urban (Phase III)

HHS - Department of Health and Human Services National Institutes of Health
Outcomes in Children with Mild to Severe Hearing Loss (R01)

HHS - Department of Health and Human Services Centers for Disease Control and
Prevention Cooperative Agreement with the Kidsrisk Project at Harvard University
Assessment of the Value of Global Vaccination and Willingness-to-Pay for Vaccines
Modification 1

CA Dept of Education Funding Funding Name: Public Charter Schools Grant

                                                                                        Monday Morning Memo
                                                                                           The Arc of California
                                                                                    July 16, 2007, page 13 of 17
                                                                              Tony Anderson, Executive Director
Eligible Applicants: local educational agencies, nonprofit organizations Required
Eligibility Criteria: Precharter grants are available to proposed new charter
schools prior to approval of the charter petition. Planning and Implementation
(P&I) grants are available to charter schools after the charter school is numbered
by the State Board of Education. Funding Description: The federal Public Charter
Schools Grant Program (PCSGP) is administered by the Charter Schools Division.
Grants are reviewed by peer evaluators and awarded on a competitive basis to
nonprofit entities and local education agencies that are likely to develop and open
high-quality charter schools. The primary focus of the PCSGP is to create charter
schools that will provide public school choice to students whose assigned
traditional public school is chronically low performing.

                          The Arc of the United States, in partnership with GrantStation, brings you the
                          GrantStation Insider each week. The GrantStation Insider provides you with the
                          latest information on new funding programs, upcoming grant deadlines,
                          conferences, trainings, and relevant information for grantseekers. The Arc of
                          California Monday Morning Memo includes a small clipping of resources from the
                          GrantStation Insider, visit their website to learn more:
Funds for Anti-Poverty Efforts
Catholic Campaign for Human Development
The Catholic Campaign for Human Development (CCHD) is the domestic anti-poverty social justice program of the U.S.
Catholic bishops. CCHD is committed to supporting groups of low-income individuals as they work to break the cycle of
poverty and improve their communities. Grant categories include Community Organizing Grants and Economic Development.
In both categories projects must benefit a poverty group, with at least 50 percent of those benefiting from the project coming
from the low-income community. Members of the poverty group must also have a dominant voice in the project. Interested
applicants should submit an Eligibility Quiz from September 1 through November 1, 2007. Visit the website listed above for
information on both of the CCHD grant programs and to access the online Eligibility Quiz.

American Chamber Music Performances and Residencies Supported
National Endowment for the Arts: American Masterpieces: Chamber Music
American Masterpieces: Three Centuries of Artistic Genius, a program of the National Endowment for the Arts, is a major
initiative to acquaint Americans with the best of their cultural and artistic legacy. Through the Chamber Music component of
the program, American chamber music of the highest quality will be experienced in communities across the nation. Grants are
available for chamber music performances in conjunction with residencies that will highlight repertoire by American composers
and enable ensembles to engage with communities in a variety of settings. Projects must be accompanied by related
educational, interpretive, or contextual components. NEA’s support of funded projects will start on or after May 1, 2008. The
performances and residencies should take place by September 30, 2009. The application deadline for this program is October
15, 2007. Applicants should apply through, a government-wide clearinghouse for Federal grants. Visit the NEA
website for more information on the program.

Awards for Model Government Programs
Innovations in American Government
The Innovations in American Government Program serves as a catalyst for continued progress in addressing the nation’s most
pressing public concerns by highlighting exemplary models of government’s innovative performance. The program identifies
and celebrates outstanding examples of creative problem-solving in the public sector. All units of government—federal, state,
local, tribal, and territorial—within the United States of America are eligible for recognition and awards. Applications must be
submitted by the governmental entity responsible for the innovation; nonprofit, private sector, and union initiatives are eligible
only with significant governmental involvement and oversight. The winners of the award are eligible to receive grants of
$100,000. The application deadline for the 2008 awards is October 15, 2007. Visit the website listed above for program details
and online application information.

Company Communities in the U.S. and Canada Supported
State Farm Companies Grants Program
The State Farm Companies Grants Program is committed to meeting the needs of company communities in the U.S. and
Canada. Support is provided to nonprofit organizations, educational institutions, and government agencies working in the
areas of safety, community development, and education The Safe Neighbors category focuses on roadway safety, protecting
homes, disaster preparedness, and personal financial security. The Strong Neighborhoods category focuses on affordable
housing, homeownership, and sustainable communities. The K-12 Public Schools category focuses on teacher quality, service

                                                                                                       Monday Morning Memo
                                                                                                          The Arc of California
                                                                                                   July 16, 2007, page 14 of 17
                                                                                             Tony Anderson, Executive Director
learning programs, and educational reform. Grant requests are accepted at any time. Visit the website listed above for more

Grants Focus on Children in Need
Speedway Children's Charities
Speedway Children's Charities is dedicated to providing funds to nonprofit organizations making a significant impact in the
lives of children in need throughout the United States. Support is provided directly to nonprofit organizations that provide
medical, educational, and social services to children. Grants are distributed through a national program as well as regional
programs, which are administered through the Charities' chapters serving California, Georgia, Maryland, Nevada, North
Carolina, South Carolina, Tennessee, Texas, Virginia, and Washington, DC. Each of the Charities' chapters has its own grant
process and application deadline. The application deadline for the national program is August 31, 2007. Visit the Charities'
website listed above for more information on both the regional and the national programs.

Foundation Promotes a Peaceful World
Colombe Foundation
The Colombe Foundation seeks to create a peaceful world through changes in American public policy. The Foundation works
for the elimination of weapons of mass destruction; a shift from war and aggression to conflict prevention and conflict
resolution; and a shift from wasteful military spending to investments in programs addressing poverty, environmental
degradation, and other root causes of violence. The Foundation’s fall 2007 grant cycle will provide support to grassroots
organizations working to educate the public and influence decision-makers, to peace advocacy organizations promoting
alternative policies, and to organizations initiating media coverage. The application deadline is September 3, 2007. Visit the
website listed above for application guidelines and forms.

To view additional funding opportunities on an ongoing basis visit the Funding News Section of the Quality Mall. The
Quality Mall is maintained by the Research and Training Center on Community Living at the University of Minnesota with
support from the National Association of State Directors of Developmental Disabilities Services, the Human Services
Research Institute and the Administration on Developmental Disabilities - U.S. Department of Health and Human Services.

                                                   Career Ladder
Position: Executive Director, Parent Services Project
Description:. The executive position is an opportunity to lead a high performing organization with a national
reputation for its excellent family support activities. The Executive Director (ED) has the overall responsibility of
ensuring the organizational vitality of PSP by achieving programmatic and financial objectives. S/he will also be
an integral part of developing and actively assisting in the implementation of PSP's future strategies. The ED will
report to the Board of Directors and direct PSP's committed and accomplished staff in creating and delivering
programs that impact families, and the community agencies that serve them, in California as well as communities
across the country. It is anticipated that the ED will have flexibility for moderate travel. The ideal candidate has a
background in family support services and in the development of community partnerships that engage parents as
decision-makers. The ideal candidate also possesses a passion for empowering families to be active voices for
their own well-being. S/he has excellent communication skills, including writing for and speaking to diverse
audiences. S/he has demonstrated an understanding of evaluation tools and their use in measuring program
impacts on systems and individuals. S/he is an accomplished "boundary- crosser" who has built collaborations
across class and racial and ethnic groups towards community goals.
Salary: Parent Services Project is offering a competitive salary that will be based on candidate's experience and
qualifications along with a generous benefits package.
How To Apply: Executive Transitions, a program of CompassPoint Nonprofit Services, is conducting this search
on behalf of Parent Services Project. Applicants should send a resume and cover letter describing their
qualifications and interest in the position to (reference PSP ED search in
subject line) by August 31, 2007. Resumes without cover letters will not be considered.

Position: Chief    Executive Officer, National Association of Councils on Developmental
Description: The Chief Executive Officer manages the programmatic and financial operations of the National
Association of Councils on Developmental Disabilities (NACDD) to accomplish the goals and objectives of the
Association as determined by the Member Councils. The Chief Executive Officer will demonstrate national
leadership and public policy experience in advocating with and on behalf of individuals with developmental
disabilities and their families using the values of inclusion and self-determination.
                                                                                                Monday Morning Memo
                                                                                                   The Arc of California
                                                                                            July 16, 2007, page 15 of 17
                                                                                      Tony Anderson, Executive Director
Salary: The NACDD offers an excellent salary and benefit package, which is comparable to other Associations
within its size and budget. NACDD encourages people with disabilities and people representing other minority
groups to apply. NACDD is an equal opportunity employer.
How To Apply: Submit a cover letter describing the reasons for interest in the position, a resume of relevant
experience, and contact information for 3 references via mail or e-mail to: CEO Search, National Association of
Councils on Developmental Disabilities, 225 Reinekers Lane, Suite 650B, Alexandria, VA 22314. Or: NACDD will not pay for travel expenses to the interview. Out of state interviews will be
conducted via telephone. NACDD will not pay for moving expenses for individuals needing to relocate.

Position: Community        Health Program Manager, University of California Davis MIND
Description:. Provide professional level program management to the Principal Investigator (Director) of the
University Center in Excellence for Developmental Disabilities (UCEDD), a statewide system that has been
established to provide training, technical assistance, service, research and information dissemination to people
with disabilities, family members, state and local government agencies and community resource programs.
Requirements: Master's Degree and extensive work experience in special education, developmental disabilities,
or related field. Demonstrated work experience in program administration and management. Experience
developing programs, writing grants, and developing/tracking budgets. Strong skills in leading teams and team
development experience. Demonstrated knowledge and experience working with individuals with disabilities,
family members, parent groups, state and community agencies, advocacy groups and service providers in the
area of developmental disabilities.
Salary: $51,516.00 - $87,576.00
How To Apply: Click on jobs on left column. Follow links to job to "View
Job Postings". Search for job using Reference #019613. For Information, Dr. Robin Hansen, Director 916-703-
0248, Ruth LeBlanc, Administrative Assistant 916-703-0235.

Position: Project Director - Tarjan Center at UCLA
Description:. Project Director: Open the Doors to College, Tarjan Center at UCLA (UCLA Job Classification:
Senior Administrative Analyst). This position serves as the primary Tarjan Center at UCLA staff for the
development, coordination and implementation of a newly funded initiative, Open the Doors to College. This
initiative will create opportunities for students with developmental disabilities in California to transition into post
secondary education (PSE). The Director will provide technical assistance; create a clearinghouse about PSE
opportunities in California; a tool kit for planning and implementing new PSE pilot programs; conduct informational
meetings, perform evaluation and administrative activities, and grant writing. The work includes performing
research and analysis of best and promising practices in PSE that can be integrated into project activities, and
reporting project outcomes; The Director will also develop content for the PSE Web site. This position requires
some travel. The Project Director will supervise and oversee all activities of the Program Representative. The
Project Director reports to the Director of the Tarjan Center.
Salary: $48,312.00 -$86,988.00 - 18 month grant funded position, renewable pending additional funding
How To Apply: Send Resume and Cover Letter Attention To: Olivia Raynor, Ph.D., Director ; or fax 310-794-1143 For more information about the Tarjan Center see

Position: Deputy     Director - Maryland Department of Health and Mental Hygiene,
Baltimore, MD
Description:. Reporting to the Director, Developmental Disabilities Administration this is executive management
and supervisory work within the Maryland Department of Health and Mental Hygiene (DHMH). With a budget of
over $740,000,000 annually, DDA provides a coordinated service delivery system, so that individuals with
developmental disabilities receive appropriate services. This is done through a combination of four state
residential centers and a wide array of community based services delivered primarily through a network of non-
profit providers. Services provided by DDA include; respite care, family support, residential support, individual
support, individual family care, children services, transitioning youth, day services, resource coordination,
behavioral support, community support living arrangements, supported employment, transportation, vocational
day programs, and workshops. Under the supervision of the Director, this position assists in and executes the
overall management, planning, and policy development of the Administration. This includes managing or assisting
in the management of day-to-day operations including fiscal and other administrative operations at headquarters
and the regional offices; developing & recommending policies for community services; evaluating and developing
                                                                                               Monday Morning Memo
                                                                                                  The Arc of California
                                                                                           July 16, 2007, page 16 of 17
                                                                                     Tony Anderson, Executive Director
legislation; representing the Administration at legislative hearings, high-level meetings, public presentations;
sanctions & penalties & conducting related hearings & case-resolution conferences; establishing standard
payment levels for services; planning & developing payment & procurement systems for community services; and
planning, developing & overseeing data systems for managing services, processing provider payments, and
submitting Medicaid claims.
Salary: $71,902 - $104,907yr (Negotiable); growth to $115,442yr. (Grade 25)
How To Apply: HOW TO APPLY: Please submit resume or state application form MS-100 to:
Mark Townend, Chief of Recruitment Department of Health and Mental Hygiene Office of Human Resources,
Room 114B 201 West Preston St. Baltimore, Maryland 21201.

                                                                                           Monday Morning Memo
                                                                                              The Arc of California
                                                                                       July 16, 2007, page 17 of 17
                                                                                 Tony Anderson, Executive Director

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