Please help support the Monday Morning Memo. Send your annual $25 check to 1225 8th Street, Suite 350, Sacramento, CA 95814 or signup online for "The Arc California Membership"
Note: The Arc is not an acronym; always refer to us as The Arc, not The
ARC and never ARC. The Arc should be considered as a title or a phrase.
Tony Anderson, Executive Director, The Arc California
Monday September 26, 2016
be participating in the Department of Developmental Services
stakeholder meeting on Self-Determination in Sacramento from 10:00 am to
3:00 pm. To learn more about the Self-Determination program visit the DDS webpage.
Tuesday September 27, 2016
Rehabilitation Services Administration (RSA) will be conducting
Regional Meetings on Program-Specific Requirements Under the
Rehabilitation Act from 9 am to 4 pm at the Dept. of Rehabilitation; 721
Capitol Mall, Sacramento, CA. "The U.S. Departments of Education (ED)
and Labor (DOL) will publish final regulations to implement changes made
by the Workforce Innovation and Opportunity Act (WIOA). ED will publish
two sets of final regulations implementing changes to programs
authorized under the Rehabilitation Act of 1973 (Act), as amended by
title IV of WIOA, as well as implementing new provisions added to the
Act by WIOA. ... In the regional meetings, RSA will cover the following
areas: competitive integrated employment, employment outcome, and
limitations on the use of subminimum wage (section 511); transition
services, including pre-employment transition services; supported
employment; and fiscal requirements." ED's RSA regional meetings.
Topics in Special Needs, Facilitated by Parents Helping Parents &
Financed by FIRST 5 Santa Clara County. "How to Recognize and Support
the 5% of Young Children Who Have Fetal Alcohol Spectrum Disorders"
presented by Kathryn Page, Ph.D. for FIRST 5 Partners and other Local
Professionals. "Through interactive dialogue, vignettes and videos,
Kathryn Page, Ph.D., will provide an overview of Fetal Alcohol Spectrum
Disorders, with an emphasis on how this condition presents in young
children and what we can do to help. Participants will come away with
the ability to recognize and support children who may be on this
spectrum, and to help caregivers adapt their approach. In addition,
Kathryn will describe in detail the spectrum, prevalence, and
presentation of disability caused by prenatal alcohol exposure;
neurodevelopmental interpretation of FASD related behavior; informal
screening techniques and interventions. This training is open to First 5
partners, therapeutic and related service providers, and parents! This
course meets the qualifications for 3 hours of continuing education
credit for LMFTs, LCSW, and LPCCs, as required by the CA Board of
Behavioral Sciences. Certificates of completion are also available upon
request. Kathryn Page was the Clinical Director of the FASD Diagnostic
Clinic at Valley Medical Center 20 years ago, and president of the FASD
Task Force in Santa Clara County. Her experience as mother of a child
with FASD has driven her to push for recognition and services in
California, joining together with other parents in that effort.
Currently president of FASD NorCal, Kathy continues to believe that
fetal alcohol-affected people can live happy, productive lives when
and resources rise to the need. The event will be from 9:00 a.m. -
12:00 p.m. at Parents Helping Parents Sobrato Center for Nonprofits -
San Jose, 1400 Parkmoor Avenue, Suite 100, San Jose, CA 95126.
Registration: Please email Zoe Folger at email@example.com or call
(408)727-5775 x187 with your name, professional title, organization, and
We'll be participating in the CalABLE Board Advisory Council meeting as the council works to strategize
the crafting of regulations for this exciting new program, for the ABLE
Act at 2 pm. Durignt eh meeting the council will hear Input
on program design and feedback on proposed regulations; Indentification
of all state laws and regulations that need to be changed and/or
updated to ensure there is no conflict between existing statutes with
the new CalABLE mandate that exempt CalABLE accounts from public program
asset test limitations; Identification of public agencies, state and
local, who work with people with disabilities and their families who can
help with outreach and education; How we might utilize the systems
public agencies serving people with disabilities have in place to
communicate to the constituents who would be eligible for an account;
Materials public agencies need to spread the word about CalABLE
Accounts. For more information on the CalABLE program, follow us on Facebook or visit our webpage.
Tuesday, September 27, , the Department of Health Care Services will
hold a conference call from 3 to 5 pm to discuss the revised Statewide
Transition Plan and approaches the State will take to come into
compliance with the federal home and community-based settings rules.
DHCS requests that any comments on the Statewide Transition Plan be
submitted on the "Public Comment Template."
Sacramento City Unified School District will hold a Meet and Greet Ice
Cream Social from 6:30-8:30 p.m. at the Serna Center, 5735 47th Avenue,
Sacramento 95824. "Optional: drop in at 6pm to discuss your child's
needs 1-1 with a special education administrator; no appointment
necessary. CHILDCARE FOR (AGES 2+) - ACTIVITIES & SNACKS. Spanish
translation services will be available. Meet the special education team,
parents, students and community groups! Begin the year with helpful
communication! Receive valuable resources to help students be
successful! Support students with special needs! CAC SCUSD Community
Advisory Committee (CAC) for Special Education www.cacscusd.orgwww.facebook.com/scusdcac
firstname.lastname@example.org For parents, students, educators, and community
groups... **For translation in other languages please call (916)
643-2374. For disability accommodations, please call the district ADA
coordinator at (916) 643-9421.
Wednesday September 28, 2016
be meeting with the Triangle Insights Group, a consulting firm
specializing in the life sciences industry, on their research and
benchmarking study on how states manage treatment for patients with
Intellectual and Developmental Disabilities, particularly for those
eligible for Home and Community Based Services (HCBS).
be participating in a meeting with advocates focused on developing a
statewide infrastructure for Supported Decision Making.
Thursday September 29, 2016
California Employment Consortium for Youth will be hosting a webinar
with Olivia Raynor, Ph.D., director of the Tarjan Center at UCLA, and
Kecia Weller, Self-Advocacy And Community Liason, on "What the
Employment First initiative means for youth and adults with
developmental disabilities, Things we now know about policy and practice
and competitive integrated employment-as learned from CECY (California
Employment Consortium for Youth with Intellectual & Developmental
Disabilities), and Changes taking place in California that affect
self-advocates who want to work." Click here to register.
We'll be participating in a public policy meeting with our national advocates to review policy issues in Washington DC.
Friday September 30, 2016
Today is the deadline to apply for the 2017 AAPD Paul G. Hearne Leadership Awards.
AAPD is now accepting applications for the 2017 AAPD Paul G. Hearne
Leadership Awards. The Awards recognize two outstanding
emerging leaders with disabilities who exemplify leadership, advocacy,
and dedication to the broader cross-disability community (by 5 pm or 2
THE ARC UNITED CEREBRAL PALSY CALIFORNIA COLLABORATION: Public Policy Reports
often, people with disabilities are victimized by what can be extreme
abuse and neglect in nursing homes and other community care facilities.
The maximum fine for a violation -- $150 -- hasn't been raised in 30
years, and leaves some facility operators with little financial
incentive to avoid these violations.
Mr. Calderon's bill will raise the fines and create new, higher fines for repeat offenses.
Guarantee Needed Mental Health Services for Special Needs Kids in Schools
school districts remove many special-needs students from mental health
services without justification, according to a state audit this year.
Beall's bill will require the Department of Education to audit mental
health services for students with individualized education programs
(IEPs) regularly, require the department to report on outcomes for
students receiving mental health services, require the department to
include a link to information on family empowerment centers on its
sample procedural safeguards -- and require the department to report on
its compliance findings and corrective action plans when the mental
services for these children fall short.
Save the Lives of Special Needs Kids on School Buses
hard to imagine how a special-needs child could be left alone on a
school bus for hours, but Mr. Mendoza found eight instances since 2012
-- all children with autism or other disabilities. There undoubtedly
were more cases, because no one tracks these abuses. In a particularly
tragic case last year, a special-needs student in Los Angeles died after
being left alone on a bus for many hours.
Mendoza's bill will require every school bus to have a safety switch at
the rear to make the drive to walk through the whole bus and check for
any children. If the driver does not activate the switch, an alarm will
sound when he or she leaves the buss. The bill also will require more
Save the Homes of People with Special Needs Trusts
Signed by the Governor Wednesday September 21, 2016
needs trusts are designed for people with disabilities, but some can't
meet their property tax obligations because their homes technically are
owned by the trusts, not by the people with disabilities -- forcing them
to sell their homes.
Beall's bill will make it clear that low-income beneficiaries of
special needs trusts can benefit from the state's Property Tax
Postponement Program in the same way as other low-income people.
SSI/SSP program provides a monthly cash benefit to needy "aged, blind,
and disabled" individuals and couples to help them pay for basic living
expenses, such as food, clothing and shelter. SSI/SSP maximum payment
for individuals was as high as $907 in January 2009 (before the
recession) and decreased to $830.40 in June 2011. We were able to get a
modest, cost-of living raise in this year's budget, effective January 1,
Brown's bill will allow annual cost-of-living raises starting in 2018.
However, Governor Brown probably will veto the bill without
significantly more pressure to sign it.
five bills are among the dozens we've fought for in the Legislature
this year, and they may be the highest priority of these yet to be
passed or defeated. If any (or all) of them are important to you or
those you love, please make your voice heard now
Thank you for your advocacy.
And please forward this action alert to everyone you know who might be
willing to help convince Governor Brown to sign any or all of these very
P.S Calls are most important now, but if you want to help even more by sending a tweet too, click here.
to NCCJD's quarterly newsletter! Our goal is to provide both criminal
justice and disability professionals/advocates and family members with
timely information about emerging issues in the criminal justice and
disability field. In each issue, be on the lookout for personal stories
of people involved in the criminal justice system, upcoming events,
trainings, webinars, and news headlines.
STORY FROM THE SYSTEM
is a young man with autism and mental illness who was arrested for
sexual battery. Kamran's competence to stand trial was questioned, and
the judge ordered an evaluation. Eight months passed; Kamran sat in
solitary confinement in jail, receiving neither accommodations nor
treatment. He was eventually found competent to stand trial. However,
Kamran was determined to be a danger to himself or others and civilly
committed in April 2016 (in Mississippi, defendants can be found
competent to stand trial while simultaneously being civilly committed).
Kamran is still on a waitlist for treatment, remains in solitary
confinement, and isn't receiving the medical care he needs. Learn more
about Kamran's story in NCCJD's upcoming Fall 2016 white paper,
Exploring the Competency Dilemma Facing People with Intellectual and
Developmental Disabilities in the Criminal Justice System: A Call to
Action for the Criminal Justice Community.
More information on competency and I/DD:
with the Criminal Defense Lawyer: A Guide for Families, addresses
competency and other issues to keep in mind when working with a criminal
Health Courts and Individuals with I/DD: A Criminal Justice Solution?
is now available. Mental health courts were created to divert offenders
away from prison into long-term community based treatment, but are they
appropriate for people with I/DD? Can they do more harm than good?
Explore these questions and more.
case you missed it! View NCCJD's compelling webinar, Exploring the
Competency Dilemma Facing People with Intellectual and Developmental
Disabilities in the Criminal Justice System available by October 1 on
IN THE NEWS
says goodbye to a legend, a visionary and a friend. Robert Perske,
long-time champion of people with I/DD in the criminal justice system,
passed away August 14 at the age of 88. Bob envisioned a better world
for people with disabilities and worked tirelessly to make change
happen. He inspired countless advocates to share his vision, and planted
the seeds over 20 years ago for what would eventually become NCCJD.
While he will be sorely missed, we can follow in his footsteps to ensure
that his mission - justice for people with I/DD - is realized. Bob's
wife Martha describes him perfectly: "He just hated injustice, when
anyone was treated unfairly. And he knew people with disabilities were
vulnerable. They needed a voice and he was their voice."
Berns, The Arc's CEO, wrote an op-ed in The Huffington Post about
justice for individuals with I/DD in the criminal justice system. He
cited the cases of Ethan Saylor, Arnaldo Rios, and Neli Latson. See "Our
Criminal Justice System is Anything But Just for People with
Dassey, whose arrest and conviction for murder when he was only 16
years old became famous in the Netflix show Making a Murderer, has had
his conviction overturned. The documentary series revealed to the masses
just how easy it is to force a confession from people with I/DD. The
Arc's statement on Dassey's release can be found here and more
information about the circumstances leading to his release can be found
NEW! NCCJD'S 2017 Policing People with Disabilities Webinar Series
us for the first in our new series of webinars on policing people with
disabilities. The Intersection of Race, Disability, and Policing will be
offered January 19, 2017 from 1:00 - 3:00 pm EST. Register here.
National Center on Criminal Justice and Disability (NCCJD) is the
national focal point for the collection and dissemination of resources
and serve as a bridge between justice and I/DD professionals. NCCJD
pursues and promotes safety, fairness and justice for all people with
intellectual and developmental disabilities as suspects, offenders,
victims or witnesses. For more information: thearc.org/NCCJD
Greg deGiere, Director of Public Policy The Arc and United Cerebral Palsy California Collaboration
Bill File: The Arc California
Governor Vetoes AB 1584
is with great regret that we report Governor Brown vetoed AB 1584 by
Assemblymembers Cheryl Brown and Tony Thurmond. This very modest bill
originally sought to make significant progress to bring our seniors and
people with disabilities who live on SSI/SSP closer to the federal
poverty level. Today they are over $100 under the federal poverty level
while at the same time live in the most expensive state in the nation.
The Arc California pledges to fight with our partners again next year to
right this wrong. Stay tuned for next session. . .
Governor Signs SB 586
now for a little good news. On Sunday the Governor signed SB 586 by
Senator Ed Hernandez, "which will help ensure that the redesign of the
California Children's Services (CCS) through the Whole Child Model (WCM)
program proceeds smoothly, with adequate safeguards in place to
preserve the quality of care CCS-eligible children and youth receive.
The bill sets forth a thoughtful, patient-centered framework that
preserves the positive aspects of the CCS program while reducing
fragmentation of care delivery to better serve children with complex
medical needs and their families." For more check out the advocates latest letter. . .
The Arc & United Cerebral Palsy California Collaboration
1225 Eighth Street, Suite 350, Sacramento, CA 95814
Tim Hornbecker, Director of Advocacy and Community Organizing
National Conference of Executives of The Arc Professional Development Seminar
not too late to reserve your place in this year's professional
development just prior to The Arc US national convention. This year we
have contracted with the Disney Institute, one of the country's foremost
professional development providers. As part of our dedication to secure
the civil rights of all people with intellectual and developmental
disabilities we are completely compelled to do all we can to assure the
professionals providing the supports and services receive the highest
quality training possible. People with disabilities and their families
deserve access to high quality services which is only achieved by
continuous professional improvement and development.
by the mystique of The Magic Kingdom, join your peers and colleagues as
we examine issues encompassing leadership and organizational
effectiveness. What competencies and programming do our leaders need to
successfully meet the needs of a diverse I/DD community in the 21st
century. The Arc is partnering with the Disney Institute to examine
these issues and more. This year's NCE Professional Development Seminar
will feature "Disney's Approach to Leadership Excellence," a half day
program that will bring time-tested insights to how leadership and
communication can be enhanced within our organizations. The 2nd half of
the Seminar will bring attendees together to strategize on effectively
using the Disney methods in their own organizations and incorporate case
studies to find solutions to common leadership challenges. Against the
backdrop of the most magical place on Earth, you will share best
practices, engage in substantive discussion and network with leaders at
the forefront of disability issues.
Who can attend?
Whether you're an executive director, staff in the fields of advocacy,
finance, programs, human resources, a board member for a state or local
chapter, or a member of the disability community, you will find sessions
that speak to your work. And just in case you didn't know, NCE members
save $100 on registration! Interested in joining NCE? Reach out to Ilyse
Kramer at Kramer@thearc.org or 202-534-3707 and she'll get you started.
National Conference of Executives of The Arc (NCE) is a dynamic peer
membership organization of Executive Directors and Management staff. NCE
creates opportunities for exchanging ideas, providing training
essential in professional development, and offering support and
mentoring for successful leadership."
The following recommendation comes from Kathryn Page, Ph.D., President of FASD NorCal:
greetings to dear friends and allies in the movement to raise awareness
and competence around FASD! As most of us on this list know only too
well, this condition slithers through the cracks--abysses!!--of existing
systems. Knitting safety nets across those abysses is possible, as
Alaska keeps showing us...with concerted effort, urgency, resources and
teamwork. The work there is happening from the national level down to
the most local, and the link below shows one example of how it's done.
I just wanted to touch base with you, share this FASD awareness piece from Alaska, and hopefully jog you into further connection--with this issue, with FASDNorCal, and potentially with each other.
The Supported Life Institute and the State Council on Developmental Disabilities Sacramento Office presents "Inclusion Is The New Standard" Empowering All People with Developmental Disabilities to be Fully Included in the Community. This year's 30th
annual conference will be held at the Crowne Plaza Hotel, 5321 Date
Avenue, Sacramento, CA 95841. Speakers include: Chantal Sicile-Kira,
author and parent, has a passion for empowering others which has led her
to become an award-winning author of five books & to offer
information online via AutismCollege.com. She is an international
speaker/trainer/consultant; & a leader in fields of autism;
adolescence; transition to adulthood; & autism & the family.
Laura Brackin, Ph.D. (sponsored by The Arc California), is a leader in
the disability field, including local, state, national nonprofit,
university, governmental and association positions. Through keynote
& session, she will help Service Agency staff, families, &
self-advocates understand how to transition toward inclusion &
integrated employment opportunities spurred by new federal CMS Settings
Rule. Shawn Casey 'Obrien, grassroots organizer, author, & founder
of "Up" - the "Unique People's Voting Project" which registered
countless Voters, especially Voters with Disabilities, insists that
registering to Vote AND Voting is key to making a difference in the
world, for ALL - those with disabilities AND the "Temporarily
Able-Bodied" - our "enlightened self-interests are the SAME.
October 21 and 22, 2016
Consortium for the Educational Advancement of Travel Instruction will be hosting. "Takin' It to the Streets: Skills to Further Enhance Your Practice of Travel Instruction
". ACVREP Credits Available, at RTC of Southern Nevada, 600 S. Grand
Central Parkway, Suite 350, Las Vegas, NV 89106 (Space is limited to 100
attendees!). A few of the keynote sessions include: "The American with
Disabilities Act - 25+ Years of Providing Freedom". Anthony A. Anderson,
JD; "Boots on the Ground: 13,140 days as a career Travel Instructor and
Certified Orientation and Mobility Specialist or Why my Hair Turned
White at 30".Lydia Barden Peterson, MS; "Influencing Drivers and
Reducing Street Crossing Risk: What Research Tell Us". Conference
Registration: Early Bird (by 7/31) - $125, Advanced (8/1-10/14) - $150,
On-Site (after 10/14) - $175. To register by mail or email, please use
PDF form. Available here >>>. Online registration form and payment option using PayPal here >>>.
Dates/deadlines and cancellation policy appear on the PDF form. HOTEL
ACCOMMODATIONS: The Orleans, 4500 West Tropicana Avenue, Las Vegas NV
89103 www.orleanscasino.com/groups or 800-675-3267, Group Name: CEATI Reservation ID: A6RTC10, Questions? Email email@example.com.
October 27-29, 2016
2016 National Convention & International Forum "Shaping the Future" will be in Orlando, FL this year and will be a joint disability event with The Arc of the United States and Inclusion International.
"Join the global conversation as people from all over the world share
best practices, struggles, successes, and hopes for the future. Our
collective work is toward a common goal-to protect and promote the human
and civil rights for individuals with intellectual and developmental
disabilities in the U.S. and abroad. Attendees can expect to make
enduring personal and professional connections while learning how to
shape the future for the better.
her daughter was diagnosed with autism in 2004, Ariane Zurcher threw
herself into researching a condition she knew nothing about. Everything
she read indicated a bleak future for Emma, then a toddler. It led
Zurcher to believe Emma would never form deep relationships, and would
probably lack empathy. She might have compulsive behaviors and meltdowns
or try to harm herself. She might never speak or be toilet-trained,
and, once Zurcher and her husband died, she might have to be
institutionalized. Zurcher says she felt as though she were "descending
and her husband took Emma to neurologists, gastroenterologists,
behavioral, speech and occupational therapists, nutritionists,
naturopaths, a shaman and homoeopath, a craniosacral therapist, and a
Qigong master. A developmental pediatrician-who didn't take insurance,
charged at least $200 per visit and had a months-long waiting
list-recommended they call a psychic in Europe; the psychic, ironically,
refused payment because she didn't pick up a 'signal' from them. They
tried dozens of treatments that claimed to have 'recovered' children
with autism, including numerous vitamin supplements, topical ointments,
restrictive diets, chelation, hyperbaric oxygen therapy, brain scans, a
so-called detoxification system, and stem-cell therapy.
is hardly alone in her pursuit for something-anything-that might
alleviate symptoms of autism in her child. Up to 88 percent of boys and
girls with autism in the United States receive some alternative
treatment, according to various studies. Parents are enticed by
alternative therapies that promise to do everything from improving
social interactions to restoring speech. But there's no scientific
evidence to support these purported benefits. Few of these therapies
have been adequately tested for safety or efficacy, many come with a
hefty price tag, and some are downright dangerous.
you start down that road, it's hard to stop," says Zurcher. As each
intervention failed to help-much less 'cure'-Emma, Zurcher searched for
the next one, feeling a surge of hope with each new possibility. "The
allure of that one magic thing was so strong," she says, "rational
thinking was suspended again and again."
* * *
it comes to alternative interventions, there's a seemingly endless
array of diets, supplements, high-tech therapies and other options. This
abundance is a reflection of both the huge spike in autism diagnoses in
recent years and the lack of good treatment options.
have uncovered tantalizing clues about the underpinnings of autism, but
those findings haven't translated into drugs to treat key aspects of
the condition. "We do not have treatments that relate in any way to what
causes autism spectrum disorder, or that really relate to what's
happening in the brain," says Jeremy Veenstra-VanderWeele, a child and
adolescent psychiatrist and associate professor of psychiatry at
Columbia University. "There are no quick fixes."
Daniel Hertzberg / Spectrum
list of treatments with a solid evidence basis is short. Behavioral
interventions for young children, which teach social skills through
repetition and reward, have proved to be somewhat effective. The therapy
is pricey, at up to $70,000 a year if insurance doesn't cover it,
requires 20 or more hours per week, and does not help all children with
autism. Many also undergo speech and occupational therapy, to the tune
of $10,000 or so each year. On the pharmaceutical side, the U.S. Food
and Drug Administration (FDA) has approved two drugs, risperidone and
aripiprazole, to treat irritability in autism. The drugs are not
approved to treat repetitive behavior or social deficits, and both have
significant side effects, including weight gain, fatigue and anxiety.
those options, it's not surprising that parents seek out alternatives.
They don't have to look far. Internet searches turn up treatments in
troves, each one accompanied by anecdotes of children who improved or
were even "cured." Facebook groups dedicated to unproven interventions
are legion. Dozens are dedicated to alternative therapies in general;
others focus on a specific treatment, such as marijuana or essential
oils. And at massive conventions, sellers present what they call
unproven treatments do not come cheap, and some are harmful. There is
zero evidence that chelation therapy (roughly $4,000 for 30
sessions)-which removes heavy metals and minerals from the body-helps
people with autism, and it carries a risk of heart failure. Hyperbaric
oxygen therapy (about $10,000 for 80 sessions), in which individuals
inhale pure oxygen in a pressurized chamber, can bruise eardrums and
cause sinus pain and seizures. Miracle Mineral Solution ($20 per bottle)
is a chemical drink that turns into the same compound used to bleach
textiles when mixed, as directed, with its citrus juice activator (an
additional $20 per bottle). Side effects of ingesting the bleach (sodium
chlorite) include nausea, vomiting, and kidney failure, according to
FDA has warned a number of companies, including those selling
treatments listed above, that they may face legal action if they
continue making false or misleading claims about treating or curing
autism. In May, LearningRx agreed to pay the U.S. Federal Trade
Commission a $200,000 fine for making false and unsubstantiated claims
that its "brain training" program (reportedly $2,500 and up) can improve
cognitive symptoms of autism.
a cottage industry of false hope," says Paul Offit, professor of
pediatrics at the Children's Hospital of Philadelphia and author of
"Autism's False Prophets," a book about dubious causes and cures. "To
me, taking advantage of parents' desperate desire to do anything to help
their children is the lowest form of quackery."
an expert, dismissing pseudo-scientific alternatives or weighing the
risks of potentially promising yet unproven treatments may be second
nature. For parents, it's much more complicated.
* * *
in 2002, Emma grew into a rambunctious, social toddler who adored being
around lots of people. When she started to speak, words often came out
grouped together. "Chase me" was a near-constant demand.
Emma was about 2-and-a-half, the family went on vacation to Cape Cod,
Massachusetts, and spent time with two other families who had young
children. Weeks before, Zurcher and her husband, Richard Long, had begun
noticing Emma's language falling away. As the couple watched the gaggle
of kids, Zurcher turned to Long.
"When was the last time Emma said 'chase me?'" she asked.
He paused. "When was the last time she said anything?" he said.
was the moment everything changed," recalls Zurcher. After they
returned home to New York City, Emma was quickly diagnosed with autism.
Zurcher stopped working as an art director at an ad agency to focus on
told there's this window to your help your child, and it's closing
fast," she says. "You feel like if you don't hurry and try anything that
might help, you're a negligent parent."
was receiving behavioral and speech therapy, though neither seemed to
help. She also suffered from gut problems. So Zurcher was encouraged
when she found stories claiming that gluten-free, casein-free diets
dramatically improve gastrointestinal (GI) issues, cognition and speech
in some children with autism. Some parents reported remarkable
improvements in their children's behavior.
cleaned out the kitchen, placed the long list of off-limits foods on
the counter, and introduced Emma to the diet. Emma refused nearly
everything. Zurcher would bake until 2 a.m. testing out new recipes, to
no avail. Emma's eye contact slightly improved-maybe. (Zurcher later
realized it actually hadn't.) But after just three months, Emma had lost
a "frightening" amount of weight. So Zurcher brought back everything
she had cut out. Now, Emma wouldn't touch many foods she had loved
before, including chicken, eggs and vegetables.
were worse off than before the diet," says Zurcher. But she was
undeterred in her quest to combat Emma's autism: "I thought of it as a
war lasted seven long years. During that time, Emma took more than a
dozen plant extracts to help her gut issues. They didn't. Nor did a
half-year of craniosacral therapy, a form of massage intended to relieve
pain and pressure in the skull and the rest of the body. The Qigong
master who promised to cure Emma by regulating her 'energy flow' was one
of many who failed to deliver. Sticking detox pads to Emma's feet to
supposedly draw toxins from her body as she slept made no difference.
Brushing therapy to reduce her sensitivity to touch riled her up and
disrupted her sleep. Auditory integration therapy, aimed at quelling her
hypersensitivity to sound, didn't help or hurt.
underwent one round of chelation before Zurcher and Long spoke to
specialists at the Albert Einstein College of Medicine in the Bronx and
learned the treatment is dangerous. (In fact, it had reportedly killed a
child with autism.) They interrupted hyperbaric oxygen therapy-no
improvement after a few sessions-to take her to Central America for
stem-cell therapy. After making three trips and seeing no effects, a
conversation with experts in the U.S. convinced them not to return. The
experts told them how risky and invasive the approach was, says Zurcher.
"They literally begged us to stop."
couple didn't always agree. Zurcher was more intent on finding and
trying treatments than Long was, and he was more skeptical. When she
decided to try another diet in 2011, he said, "I'm not okay with this,
but I'm not going to stop you," she recalls.
had read that soy and spelt-two foods she hadn't cut out of Emma's diet
before-were problematic. "I thought, I didn't do it right," she says.
"Let me do it again." Under the guidance of a naturopath, Zurcher
scoured farmers' markets for the right goat cheese. She ordered goose
eggs from Minnesota. She baked homemade fruit leathers in the oven for
10 hours. Again, Emma refused most everything; she lost 15 percent of
her body weight in six weeks. "I came across her facing the wall. She'd
stuffed a piece of goat cheese in her pocket and was eating it like a
wild animal," recalls Zurcher. "It was horrifying." She stopped the
so long, I thought any treatment was better than doing nothing at all,"
Zurcher says. She'd had doubts about almost everything they'd tried,
but she had pushed down her queasiness. Feeling perhaps greater despair
than ever before, she began to seek out adults with autism. She hoped
they might have insights that everyone who had tried to sell her
something did not.
* * *
The tricky thing about unproven treatments is that they sound scientific.
for example, single-photon emission computed tomography, or SPECT. For
around $3,500, Amen Clinics-brain health centers named for founder and
doctor Daniel G. Amen-will scan a child's brain to deliver an autism
diagnosis and create targeted treatments. "We use brain SPECT scans plus
clinical data to make diagnoses," says Amen, adding that the clinics
have scanned more than 1,000 people with autism.
experts interviewed for this story say these scans are far from-and may
never be-ready for use to diagnose autism. Some say it's pretty much
hocus-pocus. "These extremely expensive 'evaluations,' which are almost
never covered by insurance, are best described as a scam perpetrated on
families who are being preyed upon by false hopes," says Columbia's
Veenstra-VanderWeele. Brain scans can't reveal autism, because
researchers haven't yet definitively identified autism-specific brain
activity patterns or structures. And scans certainly can't indicate
which treatment would work.
most parents, who have little understanding of how science is done,
wading through claims made about alternative treatments can be
befuddling. Even when someone knows to search PubMed, an online database
of journal abstracts, she might not understand that obscure journals
tend not to be taken seriously, and might not pick up on the difference
between types of studies. A case report about a single child may be of
purely scientific interest as an avenue for further investigation, for
instance, whereas results from a rigorous randomized controlled clinical
trial with a large number of participants can provide solid information
on whether a treatment works.
more, media outlets often exaggerate the significance of findings. Take
secretin, a peptide hormone that stimulates the secretion of digestive
fluids from the pancreas. In the late 1990s, three children with autism
were reported to improve dramatically after taking secretin. (The caveat
is that this was an unblinded study-that is, the investigators were
aware that all three children had received secretin and not a placebo.)
Word spread, parents heard about it on the news, and demand for secretin
skyrocketed. But more than a dozen subsequent double-blind studies-in
which neither the families nor the researchers knew which participants
were in the placebo arm-found no evidence of effectiveness.
a scientist, you can end up on the front page of the science section of
The New York Times with a new link to autism, but not really know if
it's causal," says Catherine Lord, a clinical psychologist who heads the
Center for Autism and the Developing Brain at New York-Presbyterian
Hospital in New York City. In other words, just because researchers find
a connection between autism and a gene or some other factor does not
mean that it causes the condition-or that blocking it can reverse the
effects of autism. "I think it's probably very confusing for parents. So
when someone says, 'I can take what that scientist said and make it
meaningful for you right now,' that's incredibly appealing."
the AutismOne conference in Chicago this year, more than 150
practitioners and company representatives pitched therapies to hundreds
of attendees in talks modeled on scientific presentations. Several
presentations focused on the gut microbiome, reflecting findings
suggesting that disturbances to gut microorganisms cause the GI problems
that plague many children with autism. At last year's conference, a
physician called Zach Bush explained, using slides of the gut viewed
through a microscope as visual aids, how his plant-derived mineral
supplement, RESTORE ($49.95 for a one-month supply), strengthens cell
membranes in the gut to keep toxins from leaking out. Bush told the
parents in the audience that he was "excited to just be a piece of your
puzzle" in the parents' quest to "rebirth that child into a state of
health." The company did not respond to multiple requests for comment.
microbiome connection is in fact under investigation by multiple
respected research groups. One hypothesis being explored is that
disruption to gut microorganisms causes a 'leaky gut' that allows
bacteria to escape into the body, altering brain function and
contributing to autism behaviors.
promises such as Bush's are way ahead of the research, says Ruth Ann
Luna, director of medical metagenomics at the Texas Children's
Microbiome Center in Houston. "Right now, we're trying to characterize
the gut biome in kids with autism who have significant GI problems," she
says. Doing so could help pave the way for treating people who have
both autism and gut issues. This is an intriguing avenue of
investigation, but RESTORE and probiotic drinks marketed as autism
treatments aren't yet backed up by research.
even more aggressive approach, says Luna, is parents doing fecal
microbiota transplants at home-although the transplants are worth
investigating in clinical trials, she says. These parents mix a stool
sample from a neurotypical family member with saline, strain the
concoction, and then give the resulting liquid via enema to a child with
autism. Instructions are readily available on YouTube. "It's very
experimental and certainly risky to do without the oversight of a
physician," she says.
unproven treatments target the same links to autism being explored in
serious research, it's that much more difficult for parents to evaluate
the claims. "These so-called 'experts' are so confident, and they sound
so convincing," says Zurcher.
searching for information on, say, toxins that might have a link to
autism could come across the "IonCleanse by AMD for ASD" Facebook group,
where more than 3,300 members exchange information about a footbath
made by a company called AMD. "As children's bodies begin to detox, the
systems that were energetically blocked or shut down can start to
function normally again," the AMD website says.
don't claim to treat autism," says owner Neill Moroney, who estimates
1,000 to 1,100 people with autism have used the $1,995 footbath. Moroney
says he would like to conduct a blinded trial with 30 children over 90
days to determine whether the gadget truly alleviates symptoms of
autism. But he says the funding is difficult to find. "What I'm looking
for is someone with the resources to give it the shot it deserves," he
* * *
therapy is getting that shot, with two trials underway in the U.S. In
animal models, one type of stem cell has been shown to alleviate
inflammation in several types of tissue, including that from the brain,
bowel and bone. Postmortem studies of children with autism have revealed
inflammation of brain tissue. Stem-cell therapy isn't approved in the
U.S., but several foreign clinics offer it for around $10,000. Sarah
Collins credits the adult stem cell injections her two children received
in Panama City, Panama, with the "recovery" of her older son and
improvement in her younger son, both of whom were diagnosed with autism.
Her experience led her to co-found the "Stem-cell therapy for Autism"
Facebook group. She says one reason parents might not want to take part
in clinical trials in the U.S. is that their child might end up in the
placebo arm of the trial. "They won't mess with that," Collins says.
"They'll go right to Panama instead."
Daniel Hertzberg / Spectrum
experts say without knowing more about whether and how the therapy
works, those are costly, potentially risky ventures. The overseas
clinics offer "hope, not a proven treatment," says Emanuel
DiCicco-Bloom, a child neurologist and neuroscientist at Rutgers Robert
Wood Johnson Medical School in New Brunswick, New Jersey.
DiCicco-Bloom's team is taking blood cells from children with autism and
their unaffected siblings and converting them into stem cells. The team
then turns those cells into neurons and studies them at different
stages of development, in hopes of identifying the differences between
the siblings. "We're seeing differences in the numbers of cells, kinds
of cells, synapses, which suggests what might be contributing to
autism," he says. "But at this point, it's not like we can say: 'You're
missing these specific cells, let's put them back.'"
treatments could also be dangerous. Even though the clinic in Panama,
for instance, states on its website that it tests for viruses and
bacteria, "until a year ago, nobody would've looked for Zika,"
the risks, Karen Shearer decided to try stem cells anyway. After all,
she says, almost nothing has helped her 13-year-old daughter, Skye, who
is nonverbal, cannot dress herself and wears a diaper. To cover Skye's
first treatment in Tijuana, Mexico, in 2007, the family cashed in a
life-insurance policy; Shearer says it "was probably a scam." Last
year's $10,000 therapy in Panama, partly funded by a GoFundMe.com
campaign, also failed. Then Shearer discovered a clinic in Cancun,
Mexico, on Collins' Facebook group that infuses cells via lumbar
puncture, which the clinic says ensures the cells reach the brain. The
only improvement Shearer has seen is that Skye is no longer terrified of
the swimming pool.
she pays off her $11,000 credit card debt from Cancun, Shearer knows
what's next: the Plasticity Brain Centers, which claims to reconnect
neural pathways after their proprietary diagnostic technology pinpoints
"the exact brain functions that need treatment." Skye has tried other
brain-related treatments, but this one, Shearer says, seems to take a
this point, she says, her dream is that her daughter will dress herself
and use the toilet. "Skye's getting older but still functioning like a
2-year-old, and I'm getting more desperate," she says. "How will I
function 10 years from now? How will she?"
* * *
the dizzying profusion of alternative treatments, parents can find it a
challenge to navigate the options and weigh the risks. A few websites
provide parents with the right questions to ask: Does this practitioner
or vendor promise miracles that no one else seems to achieve? Is the
person promising the outcome also asking me for money? Do I find any
scientific research supporting their claims, or are there only
individual (often emotional) testimonials?
medical professionals may not take the time to talk through the
potential risks or flaws of alternative therapies. But Antonio Hardan, a
child and adolescent psychiatrist at Stanford University who
specializes in autism, makes a point of it. "I've been in this field for
15 years, and seemingly every month you have something that people get
excited about, and then it dies out," he says. If whatever the latest is
seems unsafe, he cautions against it-"though parents don't always
follow our recommendations," he notes.
the treatment seems safe, he helps families figure out how to include
it in their schedule and budget, and instructs them to try it for three
months, then stop and see what happens. Even with these guidelines, it's
difficult to connect an improvement to an intervention, he says: "You
don't know if it's the drug or the child's natural maturity process."
often combine multiple approaches, making it even more challenging to
track cause and effect. "I saw a kid last week who is taking 80
different supplements," says Hardan. More commonly, children take about
10 to 15 supplements, he says. "You could be the smartest person on
earth and not understand how they are working together."
emphasizes that parents should discuss all the treatments they try with
medical professionals-for safety reasons, but also because something
they're doing might warrant scientific investigation. Hardan himself has
launched studies into unproven therapies he's learned of from the
families he works with. He is testing whether the neurosteroid
pregnenolone alleviates irritability in children with autism. His group
is also considering a study into the current "big thing:" cannabis.
After seeing how cannabidiol-derived from marijuana-helps children with
epilepsy, some parents have begun giving it to their children with
autism and reporting drops in anxiety, aggression and self-injurious
possible there may be something beneficial out there," says Hardan.
"But currently, we don't know if these are safe and effective, much less
the appropriate dose and duration." In this case, parents are far ahead
of medical research, which can't yet offer any answers.
* * *
Zurcher went looking for adults with autism who might offer insight
into what the future holds for Emma, an intense internet search led her
to Julia Bascom's blog, Just Stimming. As she read every post and
clicked through to every site linked from Bascom's site, she found
people who saw autism as an integral part of their identity. "It was as
though I'd been living my life believing in this one universe, and then I
was shown this alternate universe," she says. "My entire focus changed.
Instead of fighting against Emma's neurology and trying to cure this
heinous disorder, I started finding ways to help her flourish."
major focus was giving Emma a means of communication other than speech,
which is difficult for her. Ask her name, and she might respond, "You
may not spit." Ask her age, and she might tell you she's 10. (She's 14.)
Hand her a keyboard, though, and she'll type the correct answers-and
much more. She goes slowly, picking out one letter at a time, all by
herself. A single sentence can take a couple of minutes to craft, but
the effort allows her to express herself. "There's not a direct line
between my brain and my mouth," she wrote for an English assignment in
says that for those children who can and want to type, it can be
beneficial. But there's no guarantee that all children with autism can
learn to type. "There are a very small number of people with autism who
you'd think could never type, who do become able to type independently,"
Emma takes three classes at her brother's school and is otherwise
homeschooled. She wants to get her high school diploma someday, which
looks like a real possibility. She still gets occupational therapy, but
quit speech therapy after deciding she didn't like it. She loves to
listen to music, dance, wear frilly dresses, and write for the blog
she's taken over from her mother.
has been a boon; last year, for instance, Emma told her mother she was
having stomach pains, something she couldn't have easily conveyed
before. Still, she continues to face serious challenges. She struggles,
for instance, with the inability to control things she feels compelled
to say, and bites down on her arm to help dispel stress, even though she
knows others find the behavior disturbing. "I cannot sit quietly unless
I am able to twirl my string, softly murmur to myself and have a timer
nearby. I cannot read aloud or answer most questions verbally, but I can
type," she wrote in February. "I have an incredibly large capacity to
listen, learn, and feel."
says the money they spent on their quest for a cure was "insane." She
refuses to tally up the total. "My daughter has a disability, she is
challenged, absolutely," says Zurcher. "And we make it so much harder by
stigmatizing people with autism for having a different neurology." What
still haunts Zurcher is the thought that she might have exposed her
daughter to treatments that harmed her, perhaps in ways they'll never
family no longer takes those risks with Emma's health. These days, Emma
decides which, if any, interventions to pursue. "It's much more
sensible, I think," says Zurcher. "But I'm also not living in terror
asked, Emma has said that aside from occupational therapy, none-not
one-of the interventions helped her, Zurcher says. But she doesn't seem
to hold a grudge. In fact, she appears to forgive her mother more
readily than Zurcher forgives herself. During a conversation in 2014
about past treatments, Emma seemed to understand exactly why her mother
pursued so many therapies over the years. "You thought my autism was
hurting me and that you needed to remove it, but you did not understand
that it is a neurological difference," she typed. "Fear caused you to
behave with desperation."
the Sonoma Developmental Center slated for closure, nearly 400 of the
most medically fragile patients in the state system will be
transitioning into the community system with no developmental center to
fall back on if the placement fails. In fact, across the state, over
1,000 developmental center residents will be moved out over the next
five years. Currently, there is no mandate to monitor and evaluate the
transition of residents from Developmental Centers to the community and
ensure our state follows through with its commitment to provide
appropriate services to developmentally disabled Californians. But
today, this has changed with Governor Jerry Brown signing Senator Mike
McGuire's legislation creating a quality of life tracking study for
transitioning residents as they move from developmental center care to
community care. The study will track a minimum of 250 residents from the
closing Developmental Centers for two consecutive years from the time
they leave their developmental center.
new tracking study will hold the state accountable and bring needed
transparency to the transition process. We're at a defining moment for
our state as major changes are made to the system of care for
California's developmentally disabled residents," Senator McGuire said.
"We have to ensure that as Developmental Centers are slated for closure,
we are closely monitoring the health and well-being of residents so
that immediate steps can be taken during this transition if appropriate
services and housing are not being provided." SB 982 will be an
important tool for developmental center residents and their families by
assuring the State is providing the services needed for residents to
thrive in the community. Specifically, this bill will track
transitioning residents and their family's satisfaction with the
process, the adequacy of services they are receiving in the community
along with their satisfaction of their new housing. The legislation also
requires the Department of Developmental Disability Services to report
to the legislature annually on the outcomes of these mandated surveys.
Additionally, it will enable the state to learn from and correct any
challenges that may arise from the transition in real time, and will
provide transparency and accountability on the state's investment and
responsibility to the Developmentally Disabled community. "Given the
fact that there will no longer be any developmental centers to fall back
on if residents have challenges in the community, a comprehensive study
- focused on the well-being of Developmental Center residents - should
be required and we are grateful that Governor Brown agreed," Senator
McGuire said. . .
California Disability Services Association has named the San Diego
Metropolitan Transit System (MTS) its Employer of the Year for providing
jobs to persons with developmental disabilities. The award was
presented at the association's annual awards ceremony on Sept. 21 in
Ontario, California. For more than a decade, MTS has partnered with The
Arc of San Diego to provide jobs for developmentally disabled
individuals for bus detailing services. The program currently employs 12
individuals. "MTS's partnership with The Arc of San Diego is a win-win
for our passengers and the community," said MTS Chief Executive Officer
Paul Jablonski. "Detailing our vehicles from top to bottom helps
maintain a great fleet and it also provides jobs for people who may
otherwise not be able to find work."
award highlighted MTS's commitment to diversity in the workplace and
expanding job opportunities for persons with developmental disabilities.
The Arc of San Diego nominated MTS for the award and the two agencies
have been partners since 2005. Founded in 1951, The Arc of San Diego
supports and empowers persons with disabilities to achieve their life
goals through employment opportunities, education and life skills
training, independent living support, and other community integration
activities. "MTS is a remarkable community partner that provides adults
with developmental disabilities the opportunity to be vibrant,
contributing members of the community in which they live," said David W.
Schneider, president & CEO, The Arc of San Diego. "The pride that
comes from going to work and earning a paycheck empowers these
extraordinary individuals to lead more independent and fulfilling
provides work opportunities for Arc employees at two bus facilities in
East Village and Kearny Mesa. The Arc employees are responsible for
ensuring the cleanliness of the interior of all MTS buses by detailing
all surfaces from the ceiling to the floor. The partnership calls for
more than 1,500 deep cleans annually, but the Arc employees consistently
achieve more than 2,000 thanks to their speed and efficiency on the
job. This is a significant accomplishment since MTS buses are
deep-cleaned every 6,000 miles as part of the preventative maintenance
cycle. Arc employees typically deep-clean four buses per day, taking a
crew of four people about two hours per 40-foot bus. The opportunity has
provided Arc employees with stable positions, good working hours, sense
of responsibility and accomplishment.
The Arc Central Chesapeake in Annapolis (By Joshua McKerrow / Baltimore Sun Media Group)
Rollason, executive director of The Arc Central Chesapeake Region, will
retire at the end of the month after more than 18 years at the
organization's helm. The Arc, a nonprofit that serves people with
developmental disabilities and their families, expanded under Rollason's
leadership from Anne Arundel County to five counties on the Eastern
Shore, the organization said in a statement Wednesday. Rollason, who has
headed two chapters of The Arc, pioneered progressive programs
involving customized employment, microenterprise, educational advocacy
and grant programs for families and children, the statement said. She
also helped establish Project SEARCH in Anne Arundel County. Project
SEARCH is a national model that places students during their last year
of school in internships at local businesses. Many participants are
hired by the host business or other local companies, The Arc's statement
said. "Because of Rollason's interminable advocacy, passion, empathy
and certitude, hundreds, if not thousands, of individuals are living
self-directed lives," the statement said. Rollason's retirement takes
effect Sept. 30. A national search firm, Raffa, will provide The Arc
interim leadership and work with the Board of Directors to find a new
Arc of California posts job announcements in the Career Ladder section
every week because we would like to contribute to steering quality
candidates to professional positions that support people with
disabilities and we are trying to communicate to Direct Support
Professionals that there is a real "career ladder" in their chosen
Health & Human Services Agency (HHSA) of the County of San Diego is
seeking online applications and resumes from highly qualified
individuals to lead and direct the activities of First 5 San Diego as
their Executive Director. First 5 San Diego promotes the health and
well-being of young children during their most critical years of
development, from the prenatal stage through five years of age. Our goal
is to help ensure that every child in San Diego County enters school
ready to succeed. Salary: $150,000 - 159,000
position of Program Director (Continuing Educator II) is charged with
internal and external leadership as well as overall management
responsibility of program, operations and personnel for the Resource
Center for Family-Focused Practice. The Program Directors is an academic
leader within the Center for Human Services and serves as the principal
investigator for all work conducted by the Resource Center-providing
important administrative review and oversight for this work. The
position has the support of seven direct reports (including a team
supervisor, a project manager and five subject matter experts) and a
total of 14 team members. Calling on expertise in a broad array of
issues confronting human services professionals and public agency
officials, the position develops partnerships with a variety of clients
to conduct professional needs assessments; create educational programs
and training; conduct applied research; and provide other professional
and organizational development services. The position is also
responsible for developing and fostering strong and positive working
relationships with partners and clients, including state and county
social services program leaders, professional associations, instructors
and campus faculty. Salary $59,028-104,148. Placement within salary
range commensurate with qualifications and experience.
Executive Director is responsible for providing strategic and
operational leadership to Valley Mountain Regional Center (VMRC),
located in Stockton, California, and serving children and adults with
developmental disabilities in San Joaquin, Stanislaus, Amador, Calaveras
and Tuolumne counties. Key duties include overseeing strategic
planning, financial management, organizational development, staff
management, program operations, and contract compliance. Guidance and
oversight is provided by the VMRC Board of Directors and Executive
Committee. Positions reporting to the Executive Director include the
Chief Financial Officer, Director of Case Management, Director of Human
Resources, Director of Information Technology, Director of Clinical
Services, and Executive Assistant.
California State Association of Counties (CSAC) is recruiting for one
Legislative Analyst in the Government Finance and Administration policy
area. The Legislative Analyst is responsible for tracking and analyzing
legislative and budget proposals; drafting language for proposed bill
amendments; preparing research documents; preparing agendas for and
participating as a resource in CSAC policy committee meetings; and,
writing letters, reports and articles concerning proposed legislation
and the state budget.
combination of training and experience that would likely provide the
required knowledge and abilities is qualifying. A typical way to obtain
the required knowledge and abilities would be: Education equivalent to
graduation from a four (4) year college or university with a major in
Social Work, Business Administration, Public Administration or a closely
related field. Five (5) years of professional experience working in
public or private agency human services program; including two (2) years
in a management capacity. Possession of a Master's Degree in Public or
Business Administration, Social Services or a closely related field is
plan, organize, and direct the Butte County Department of Employment
and Social Services, and implement a broad range of welfare assistance
and benefit programs throughout the County; and to perform related
duties as required.
the direction of the Chief Deputy Director, DOR, the Deputy Director is
responsible for oversight and direction of the Vocational
Rehabilitation Policy and Resources Division (VRPRD), a division of
approximately sixty (60) staff including an Assistant Deputy Director
and five (5) Staff Services Managers. VRPRD works closely with
vocational rehabilitation public partners in the education system,
including kindergarten through twelfth grade and community colleges, and
mental health systems, to provide services to individuals with
disabilities and to leverage resources. VRPRD must develop innovative
approaches to providing services to individuals with disabilities which
is provided through other DOR divisions. Some of the new, innovative
policies being developed relate to services for children as young as
thirteen years old to prepare them for post-secondary education and
meaningful careers, and services for adults with developmental and
intellectual disabilities in order to increase job opportunities and pay
in an integrated setting. The CEA is at level B because the Deputy
Director is responsible for extensive managerial and program
administration and or substantially participates in the formulation,
operation, and/or evaluation of program policies.
State Director, The Arc Wisconsin will build and lead a growing,
vibrant and effective movement of people with intellectual and
developmental disabilities (I/DD), their parents, siblings and family
members, and the professionals and organizations that serve them, to
promote and protect the civil rights of people with I/DD and to actively
support their inclusion and participation in their communities
throughout their lifetimes. The State Director will build a new State
Office of The Arc Wisconsin that will advance the vision, goals and
strategies set forth in Strategic Framework for the Future of The Arc,
2010-2019. The State Office is charged to influence public policy
developments in the executive, legislative and judicial branches of
government which affect people with I/DD, promote public awareness about
their needs, issues and concerns, and encourage, assist and support
local chapters of The Arc.
the direct supervision of the Director and with delegated authority,
the Chief of the Branch will be responsible for the following duties:
*Formulates, supervises and implements the substantive work programme of
the Branch in the areas of ageing, family, youth and disability as well
as social integration and social inclusion. Oversees the management of
activities undertaken by the units of the Branch, ensures that
programmed activities are carried out in a timely fashion and
co-ordinates work in assigned areas both within the Division and
Department, and with other organizations of the United Nations System,
as well as liaises with other agencies and bodies of the United Nations
system as appropriate. *Leads and undertakes research and analysis of
issues and trends on ageing, disability, youth and family and provides
programmatic and substantive reviews of the drafts prepared by
Resource Center of Santa Barbara seeks a Manager of Development and
Marketing who can manage strategic communications and lead the
acquisition of financial and other resources to sustain the work and
fulfil the Mission of Alpha. The Manager of Development and Marketing is
responsible for all fundraising initiatives and activities for the
organization including fundraising events, planned and annual giving
campaigns, individual donor identification and cultivation, grant
writing, foundation and corporate development as well as marketing.
The position will create and execute tailored communication strategies
for multiple audiences; corporate and cash donors, media, foundations,
and the general public. This position develops relationships within the
community to achieve visibility and participation in reaching Alpha's
goals. The position manages the department's budget, participates as a
member of the management team, participates in strategic planning,
provides leadership to the Development Committee and assists the CEO and
Board of Directors to formulate and implement the organization's short-
and long-term marketing and development goals. We have a beautiful
campus in the foothills of Santa Barbara with a dedicated staff and a
competitive benefits package. Interested parties can contact the HR
Manager at firstname.lastname@example.org. Salary $50K to $80K DOE
Resource Center of Santa Barbara is hiring an Assistant Manager for our
Adult Services programs. This position will assume responsibility for
development, coordination, implementation and maintenance of
client-centered curriculum, including development of work and community
opportunities. We seek a well-organized individual experienced with
working with people with developmental disabilities or delays, who can
take responsibility for effective on-going communication with agencies,
families, care providers and consumers regarding service plans. This
position will establish, coordinate and maintain responsive admission
procedures including assessments. Along with the Program Manager they
will track and do billing for state funded programming as well as
managing and overseeing an internal budget. They will be responsible for
coordination of consumer transportation, attendance and departures.
Under the direction of the Program Manager, they will coordinate of
staff duty schedules during unstructured time and contribute to staff
development including training and evaluations. We have a beautiful
campus in the foothills of Santa Barbara with a dedicated staff and a
competitive benefits package. Interested parties can contact the HR
Manager at email@example.com. Salary $40K to $60K DOE
Arc of Illinois is the leading advocacy organization supporting
individuals with intellectual and developmental disabilities throughout
the State of Illinois. Terri Devine, Arc of Illinois Board Chair, has
announced that Tony Paulauski will be retiring after 25+ years as
Executive Director. She will be leading the board search committee to
find a visionary leader who will continue the good work of the Arc of
Illinois. The candidate for this position will be an experienced
professional advocate for people with intellectual/developmental
disabilities and their families. Additionally, S/he will have a
demonstrated ability to cultivate relationships with Arc Chapters, other
disability providers, associations, funders and political leaders.
Candidates must have senior administrator experience in a disability
related organization, hold a Bachelor's Degree (Masters preferred) in a
related discipline and have proven background in governmental affairs,
finance, development and personnel management. The Executive Director
will represent the organization throughout the State of Illinois. The
Executive Director reports to a volunteer Board of Directors.
The Arc California 1225 8th Street, Suite 350 Sacramento, CA 95814 916.552.6619
Advocates for people with intellectual and all other developmental disabilities and their families since 1950.