tony@thearcca.org
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September 26, 2016  
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Editor's 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
We'll 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
The 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.
 
Special 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
awareness 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 zoe@php.com or call (408)727-5775 x187 with your name, professional title, organization, and contact information.
 
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
 
Next 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." 
 
The 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.org  www.facebook.com/scusdcac  cacscusd@gmail.com 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
Se'll 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).
 
We'll be participating in a meeting with advocates focused on developing a statewide infrastructure for Supported Decision Making.
 
Thursday September 29, 2016
 
The 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 pm PDT).
 

THE ARC UNITED CEREBRAL PALSY CALIFORNIA COLLABORATION:  Public Policy Reports 
 
 
 
State
Updated Alert as of September 25, 2016
 
(Many others still pending, see our bill file section below)
 
Dear Disability Community Friends,
 
Special education.
 
Abuse and neglect.
 
Special needs trusts.
 
SSI/SSP.
 
If any of these issues are important to you or those you love, please take a minute now to email Governor Brown to ask him to take action!
 
Five bills we've fought for all year passed the Legislature before it adjourned for the year on August 31. Now they're on the governor's desk for signature - or veto.
 
Here are the five bills:
 
Stop Abuse and Neglect in Nursing Homes and Care Facilities
 
STILL ACTIVE:
 
Too 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
 
STILL ACTIVE:
 
Some school districts remove many special-needs students from mental health services without justification, according to a state audit this year.
 
Senator 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
 
STILL ACTIVE:
 
It's 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.
 
Mr. 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 training.
 
Save the Homes of People with Special Needs Trusts
 
Signed by the Governor Wednesday September 21, 2016
 
Special 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.
 
Senator 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.
 
Stop a Veto of SSI/SSP Cost-of-Living Raises
 
Vetoed: Sunday September 25, 2016
 
The 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, 2017.
 
Assemblymember 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.
 
These 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.
 
Greg
 
PS. 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 important bills.
 
 
P.S Calls are most important now, but if you want to help even more by sending a tweet too, click here.
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SIGN UP FOR OUR CALIFORNIA ACTION ALERTS
 
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National
     
Welcome 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
Kamran 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.

RESOURCES
More information on competency and I/DD:
*        Working with the Criminal Defense Lawyer: A Guide for Families, addresses competency and other issues to keep in mind when working with a criminal defense attorney.
*        Mental 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.
*        In 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 NCCJD's website.
IN THE NEWS
*        NCCJD 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."
*        Peter 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 Disabilities".
*        Brendan 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 here.
 
Upcoming Events
NEW! NCCJD'S 2017 Policing People with Disabilities Webinar Series
Join 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.

About NCCJD
The 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
 
sign up for:
The Arc US Capitol Insider
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SIGN UP FOR OUR NATIONAL ACTION ALERTS
  
Greg deGiere, Director of Public Policy The Arc and United Cerebral Palsy California Collaboration
Bill File: The Arc California  

Governor Vetoes AB 1584
It 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
And 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 Bill File.
 
Greg

Thank you for your advocacy.
Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collaboration
1225 Eighth Street, Suite 350, Sacramento, CA 95814
Project Updates
 
Tim Hornbecker, Director of Advocacy and Community Organizing
National Conference of Executives of The Arc Professional Development Seminar
 
It's 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.
 
"Surrounded 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?
Everyone! 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.
 
The 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."
 
 
 
 
 
Tim Hornbecker, Director
Advocacy and Community Organizing tim@thearcca.org


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Teresa Anderson, Prevention Coordinator
PREVENTION ACTIVITIES
 
The following recommendation comes from Kathryn Page, Ph.D., President of FASD NorCal:
 
Fall 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.  
 
You can find updates for our doings on http://www.fasdnorcal.org/   along with additional annotated resources. . .

Teresa Anderson, MPH
The Arc California
Prevention Coordinator
teresa@thearcca.org
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UPCOMING EVENTS
 
October 6-7, 2016
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 pfurlong831@gmail.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.

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RECENTLY RELEASED REPORTS, STUDIES, ETC.
 
The Atlantic September 22, 2016
By Alisa Opar
 
When 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 into hell."
 
She 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.
 
Zurcher 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.
 
"Once 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."
 
* * *
 
When 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.
 
Scientists 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
 
The 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.
 
Given 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 "breakthrough" treatments.
 
These 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 Health Canada.
 
The 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.
 
"It's 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."
 
To 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.
 
* * *
 
Born 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.
 
When 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.
 
"That 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 Emma full-time.
 
"You're 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."
 
Emma 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.
 
Zurcher 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.
 
"We 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."
 
The 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.
 
Emma 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."
 
The 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.
 
She 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 diet.
 
"For 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.
 
Take, 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.
 
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.
 
For 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.
 
What's 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.
 
"As 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."
 
At 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.
 
The 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.
 
But 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.
 
An 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.
 
When 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.
 
Someone 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.
 
"We 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 says.
 
* * *
 
Stem-cell 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
 
But 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.'"
 
Stem-cell 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," DiCicco-Bloom says.
 
Knowing 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.
 
Once 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 different approach.
 
At 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?"
 
* * *
 
Given 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?
 
Many 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.
 
If 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."
 
Parents 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."
 
He 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 behavior.
 
"It's 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.
 
* * *
 
When 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."
 
One 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 May.
 
Lord 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," Lord says.
 
Today, 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.
 
Typing 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."
 
Zurcher 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 know.
 
The 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 anymore."
 
When 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."

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NEWS ARTICLES
 
By Eureka Times-Standard September 24, 2016
By Senator Mike McGuire
 
...With 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.
 
"This 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. . .
 
Metropolitan Transit System (MTS) Sep 22, 2016
 
The 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."
 
The 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 lives."
 
MTS 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.
 
Crowding at Arc of the Central Chesapeake
Capital Gazette September 21, 2016
 
The Arc Central Chesapeake in Annapolis (By Joshua McKerrow / Baltimore Sun Media Group)
Kate 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 executive director.


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FUNDING OPPORTUNITIES

 
HHS - Department of Health and Human Services Administration for Children and Families - ORR Standing Announcement for Residential (Shelter) Services for Unaccompanied Children Synopsis 4http://www.grants.gov/web/grants/view-opportunity.html?oppId=284278
 
HHS - Department of Health and Human Services National Institutes of Health Perinatal Stroke (R01)Synopsis 1http://www.grants.gov/web/grants/view-opportunity.html?oppId=289095
 
HHS - Department of Health and Human Services National Institutes of Health Basic and Translational Research on Decision Making in Aging and Alzheimer's Disease (R01)Synopsis 1http://www.grants.gov/web/grants/view-opportunity.html?oppId=289099
 
HHS - Department of Health and Human Services National Institutes of Health Basic and Translational Research on Decision Making in Aging and Alzheimer's Disease (R21)Synopsis 1http://www.grants.gov/web/grants/view-opportunity.html?oppId=289100
 
HHS - Department of Health and Human Services National Institutes of Health Short-term Measurements of Physical Resilience as a Predictor of Healthspan in Mice (R01)Synopsis 1http://www.grants.gov/web/grants/view-opportunity.html?oppId=289109
 
HHS - Department of Health and Human Services National Institutes of Health Learning Disabilities Research Centers (P50)Synopsis 1http://www.grants.gov/web/grants/view-opportunity.html?oppId=289112
 
Department of Health and Human Services Health Resources and Services Administration rural Health Network Development Program Synopsis 1http://www.grants.gov/web/grants/view-opportunity.html?oppId=284898
 
HHS - Department of Health and Human Services Health Resources and Services Administration Service Area Competition Synopsis 2http://www.grants.gov/web/grants/view-opportunity.html?oppId=284904
 
HHS - Department of Health and Human Services National Institutes of Health BRAIN Initiative: New Concepts and Early-Stage Research for Large-Scale Recording and Modulation in the Nervous System (R21)Synopsis 1http://www.grants.gov/web/grants/view-opportunity.html?oppId=289008
 
HHS - Department of Health and Human Services National Institutes of Health BRAIN Initiative Fellows: Ruth L. Kirschstein National Research Service Award (NRSA) Individual Postdoctoral Fellowship (F32)Synopsis 1http://www.grants.gov/web/grants/view-opportunity.html?oppId=288994


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CAREER LADDER
The 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 profession.
 
Jobs Page Links: Click Here
Executive Director, First 5 Commission San Diego County
The 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
 
The 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.
 
The 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.
 
The 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.
 
Any 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 highly desirable.
 
To 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.
 
Under 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.
 
The 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.
 
Under 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 others....
 
Alpha 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 mjbakove@alphasb.org. Salary $50K to $80K DOE
 
Alpha 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 mjbakove@alphasb.org. Salary $40K to $60K DOE
 
Executive Director
 
The 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.

The Arc California, 1225 8th Street, Suite 350, Sacramento, CA 95814
 
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The Arc of California, 1225 8th Street, Suite 350, Sacramento, CA 95814.  Office (916) 552-6619, Fax (916) 441-3494