Monday Morning Memo, January 2, 2017
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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.
…The Week Ahead
Transition Plan Update from The Arc California Board of Director:
It’s a holiday and Tim Hornbecker and I are meeting with outgoing Executive Director Tony Anderson one last time before he starts work tomorrow morning at the Mountain Valley Regional Center. It has been a great thirteen years with Tony. Speaking for the Board of Directors and all the women and men who have served as Board Presidents, we wish Tony all the luck in the world as he starts a new career chapter in the New Year. Thanks for moving the Arc and the partnership with United Cerebral Palsy to new levels, Tony, and thanks for going the extra mile to make the transition a smooth one.
Meantime, the search for a new Executive Director continues. We have a number of very qualified candidates so far and are accepting applications through January 13, 2017 (or until filled). Send a cover letter and resume to .
Sincerely,
Richard Fitzmaurice
President of The Arc California
MondayJanuary 2, 2017 – New Year’s Day Holiday Day Off
Today is my last day at work as the Executive Director of The Arc California and tomorrow I will begin a new chapter of my career as the Executive Director of Valley Mountain Regional Center based in Stockton California. Besides all the last-minute transition activities we’re engaged in throughout the day I want to make sure to thank so many people who made my time at The Arc successful, enjoyable, and extremely meaningful. There have been so many important people who have contributed and I’m sure I will miss mentioning many so I apologize in advance.
First and foremost is Shirley Dove (my first board president) who laid out for me a blue print for the type of executive director The Arc California should be. She taught me not to judge or look down upon anyone in our community who has a different philosophical position it just further divides us. I’ve been fortunate to have wonderful board presidents to serve such as Pat Heineke, Dwight Stratton, and Richard Fitzmaurice. I’ve been fortunate to learn from many of the nation’s best advocates including Paul Marchand and Marty Ford and three CEOs of The Arc US Steve Eidelman, Sue Swenson, and Peter Berns each unique leaders and equally important to me in my development in The Arc network.
I am particularly thankful to The Arc CA for providing me the opportunity to work on meaningful initiatives such as FASD prevention/treatment, criminal justice projects and legislation, early start and family supports, professional development with the direct support professionals and executive level staff through the NCE, and Partners in Policymaking just to name a few. One of my most important working relationships was with Mary Gonzales and Greg Galluzo focused on community organizing and increasing the power of our community where I used these skills in advocacy actions and protests and so much more.
I have always said that if your answer to a difficult question with which our community is faced is simple and easy then you just haven’t asked The Arc. I appreciate that The Arc California is made up of advocate family members and self-advocates as well as CEOs of community service provider chapters and with this make up must consider many angles and impacts of every issue. I thank Pat Hornbecker for ensuring that over the past 13 years my focus never left the families and individuals with IDD, Jim Stream for keeping me focused on the Respect issue and so much more, Peter Bowers and the late Barbara Maizie for their continuous emphasis on the IPP and person centered planning, Lori Ramirez for the emphasis on positive approaches for support, Jim Baldwin for his constant support for building power for our community, Dave Schneider for his leadership in supporting so many special projects we led, Patty Schultz and Donna Lindley for their emphasis on the DSPs, Michael McGinnis for your tireless efforts to provide opportunities for chapters to learn from each other, Ron Luter for your passion and willingness to support The Arc California board and transition, and all executive directors and CEOs of The Arc chapters and UCP affiliates (thank you Ron Cohen for working with me to create the Collaboration with The Arc and UCP).
I want to thank my staff Gwen Lopez, Greg deGiere, Carlos Palacios, and my children who have all volunteered over the past 13 years and my wife Teresa Anderson who volunteered in he policy arena and special events since I started. Thank you, Tim Hornbecker for taking on the task of interim executive director and managing the recruitment process I have all the confidence that The Arc California will continue to move forward as it has since 1950 and beyond.
You know those beautiful horses we often see at the state capitol from the California Highway Patrol Mounted Patrol Unit? Well today they be in the 2017 Tournament of Roses Parade in Pasadena. Congratulations to our friends who keep us safe during our large protest rallies.
Tuesday January 3, 2017
Today is the deadline for the “Rural Health Network Development Planning Grant.” “The Rural Health Network Development Planning Grant Program provides grants to promote the planning and development of healthcare networks in order to achieve efficiencies; expand access to, coordinate, and improve the quality of essential healthcare services; and strengthen the rural healthcare system as a whole.”
Wednesday January 4, 2017
The California Senate led by Senator Kevin deLeon pro Tem will convene on the Floor of the Senate at 2 P.M. for the second day of the session. To view live streaming committee hearings, please visit:
The California Assembly led by Speaker Anthony Rendon will convene at 1 P.M on the Assembly Floor. For the second day of the session.
The Autism Research Institute will be hosting a webinar “An Integrative Pediatric Neurologist's Perspective On PANS/PANDAS, ASD” from 10:00 AM - 11:00 AM PST. “Maya Shetreat-Klein, MD is a pediatric neurologist, herbalist, urban farmer, naturalist and author of The Dirt Cure: Growing Healthy Kids with Food Straight from Soil (Simon and Schuster, 2016), which has been translated into ten languages. She offers an integrative approach to neurological, behavioral and cognitive problems as well as chronic pediatric issues.”
Thursday January 5, 2017
People with Disabilities Foundation lawsuit (PWDF v. Colvin, Case No. 3:15-cv-02570) will be heard today. The case involves SSA’s withholding of attorney fees owed to PWDF. “SSA repeatedly refuses to pay PWDF fees approved by a judge. The SSA’s position violates its obligations under the Social Security Act, as amended by the Omnibus Reconciliation Act (OBRA) 1990, and is inconsistent with IRS rules related to § 501(c)(3) corporations. Specifically, IRS Revenue Procedures state: “Attorney fees must be paid to the organization not to individual staff attorneys. Staff attorneys and employees must be compensated by a straight salary that does not exceed reasonable amounts and is not established in connection with case fees received for cases handled.” Click here for more information.
Friday January 6, 2017
The California Collaborative for Long Term Services and Supports (CCLTSS) will be meeting at the California Foundation for Independent Living Centers (CFILC) in Sacramento. Members are particularly encouraged to attend this first meeting of the year which will include expert guests on Housing and the Continuing Care Initiative (CCI).
…Public Policy Reports
State
As we get ready to start the new legislative session it would be very helpful for advocates to have the legislative calendar in your records. Below you will find the dates the legislators focus on certain parts of the legislative process:
2017 TENTATIVE LEGISLATIVE CALENDAR FIRST YEAR OF BIENNIUM CALIFORNIA STATE ASSEMBLY 2017–18 REGULAR CALENDAR2017
Jan. 1 —Statutes take effect (Art. IV, Sec 8(c)).
Jan. 4 —Legislature reconvenes (J.R. 51 (a)(1)).
Jan. 10 —Budget Bill must be submitted by Governor (Art. IV, Sec. 12(a)).
Jan. 16 —Martin Luther King, Jr. Day.
Jan. 20 —Last day to submit bill requests to the Office of Legislative Counsel.
Feb. 17 —Last day for bills to be introduced (J.R. 61(a)(1), J.R. 54(a)).
Feb. 20 —Presidents’ Day.
Mar. 31 —Cesar Chavez Day.
Apr. 6 —Spring Recess begins upon adjournment (J.R. 51(a)(2)).
Apr. 17 —Legislature reconvenes from Spring Recess (J.R. 51(a)(2)).
Apr. 28 —Last day for policy committees to hear and report to fiscal committees fiscal bills introduced in their house (J.R. 61(a)(2)).
May 12 —Last day for policy committees to hear and report to the Floor nonfiscal bills introduced in their house (J.R. 61(a)(3)).
May 19 —Last day for policy committees to meet prior to June 5 (J.R. 61(a)(4)).
May 26 —Last day for fiscal committees to hear and report bills to the Floor (J.R. 61(a)(5)). Last day for fiscal committees to meet prior to June 5 (J.R. 61(a)(6)).
May 29—Memorial Day observed.
May 30-June 2 —Floor Session only. No committee may meet for any purpose except Rules Committee, bills referred pursuant to Assembly Rule 77.2, and Conference Committees(J.R. 61(a)(7)).
June 2 —Last day to pass bills out of house of origin (J.R.61(a)(8)).Committee meetings may resume (J.R. 61(a)(9)).
June 15 —Budget Bill must be passed by midnight (Art. IV, Sec.12(c)(3)).
July 4—Independence Day.
July 14 —Last day for policy committees to hear and report fiscal bills for referral to fiscal committees (J.R. 61(a)(10)).
July 21 —Last day for policy committees to hear and report bills (J.R.61(a)(11)). Summer Recess begins upon adjournment, provided Budget Bill has been passed (J.R. 51(a)(3)).
Aug. 21—Legislature reconvenes from Summer Recess (J.R. 51(a)(3)).
Sep. 1 Last day for fiscal committees to meet and report bills to the Floor (J.R. 61(a)(12)).
Sep. 4 —Labor Day.
Sep. 5-15 —Floor Session only. No committee may meet for any purpose except Rules Committee, bills referred pursuant to Assembly Rule 77.2, and Conference Committees (J.R.61(a)(13)).
Sep. 8 —Last day to amend on the Floor (J.R. 61(a)(14)).
Sep. 15 —Last day for any bill to be passed J.R. 61(a)(15)). Interim Recess begins upon adjournment (J.R. 51(a)(4)).
Oct. 15 —Last day for Governor to sign or veto bills passed by the Legislature on or before Sept. 15 and in the Governor’s possession after Sept. 15 (Art. IV, Sec.10(b)(1)).
(SOME DATES INCLUDED IN THIS CALENDAR ARE SUBJECT TO CHANGE)
Greg deGiere
Public Policy Director
The Arc and United Cerebral Palsy California Collaborative
1225 Eighth Street, Suite 350, Sacramento, CA 95814
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National
Two Small Words Bring Meaningful Change for Special Needs Trusts
Posted on December 21, 2016 by The Arc
By Marty Ford
The enactment of the 21st Century Cures Act (P.L. 114-255) on December 13 brought with it a very short but meaningful provision for people with disabilities. By adding only two words (”the individual”) to an existing statute, section 5007, the Fairness in Medicaid Supplemental Needs Trusts, will allow individuals who have disabilities to set up their own self-settled trusts for purposes of the Medicaid program. This technical fix was long needed to address a technical legislative drafting error in a 1993 federal law which was later interpreted to have Congressional intent.
Self-settled special needs trusts are an important planning tool for many individuals with disabilities who receive certain government benefits, such as Medicaid and Supplemental Security Income (SSI), and who receive funds from other sources, such as an inheritance or personal injury lawsuit. Without such a trust, these individuals would lose their government benefits that are essential for basic living and medical expenses. Prior to enactment of this new law, individuals with disabilities who didn’t have a living parent or grandparent couldn’t create their own self-settled special needs trust without going to court. This new law moves us forward in addressing the needs of many people with disabilities who can and should be able to handle their financial affairs without the need for court intervention or other obstacles that stand in the way.
Also, sign up for: The Arc US Capitol Insider
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Project Status Report
Community Organizing
Advocacy and Community Organizing Report
Strong voices and powerful stories needed!
Welcome to a New Year of keeping our message and issues in front of our local, state and federal elected officials. We have our work cut-out for us in a new landscape where children with disabilities have been labelled as the biggest problem in our schools, people with Cerebral palsy made fun of publicly, and block grants recommended for each State to determine how much or how little to spend on supports for people with intellectual and developmental disabilities!
Last week I shared the online self-advocacy website from the Research and Training Center on Community Living at the University of Minnesota: selfadvocacyonline.org. Hopefully this site will help individuals and families find educational resources, other self-advocacy groups, organizing skills and especially how to tell their stories. What is going to be needed most in the months ahead? Not getting Fed Up, but Speaking Up! Standing Up! Individually and Collectively!
We all have our stories and our voices. But we will only have more clout and power by getting more people involved and more organizations together! The Lanterman Coalition met last month, and will be meeting In January, all 24 organizations. That’s a powerful group! The Arc of the United States will be convening the National Disability Policy Seminar, followed by visits to legislators on Capitol Hill from March 20th to 22nd in Washington, D.C. Cosponsoring organizations include The Arc US, American Association on Intellectual and Developmental Disabilities, Association of University Centers on Disabilities, National Assoc. of Councils on Developmental Disabilities, Self-Advocates Becoming Empowered, and United Cerebral Palsy. Even more power by working together. Then The Arc/UCP of California Public Policy Conference is March 26th to 28th in Sacramento, which is our statewide powerbase!
We need you now, more than ever, to join our efforts here in Sacramento, California and Nationally!
Tim Hornbecker, Director of Advocacy and Community Organizing and Interim Executive Director
…Prevention Activities
January is National Birth Defects Prevention Month. One in every 33 babies in the U.S is born with a birth defect. Though not all birth defects are preventable research shows innovation and progress in preventing and treating many different birth defects. The Centers for Birth Defects Research and Prevention (CBDRP) are a collaborative group of ten study centers dedicated to increasing knowledge about birth defects, identifying factors that put babies at risk and recommending areas for further research. The Centers for Disease Control and Prevention funds and coordinates the CBDRP to collaborate on the National Birth Defects Prevention Study. Key findings in the study highlight some preventable risk factors for major birth defects including: diabetes and obesity, smoking and medications.
Each year the National Birth Defects Prevention Network, Education and Outreach Committee chooses a theme and develops materials and resources to assist state program staff and others interested in promotingNational Birth Defects Prevention Month. The 2017 theme is PREVENT TO PROTECT: Prevent Infections for Baby’s Protection. The NBDPN offers materials to increase awareness and promote healthy outcomes.
For more information please visit the following websites:
Teresa Anderson, MPH
The Arc California
Prevention Coordinator
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…Upcoming Events
February 27–28, 2017
The 15th Annual Family Voices of California Health Summit & Legislative Day sponsored by Family Voices of Californiawill be in Sacramento from February 27-28, 2017.
March 20 - 22, 2017
The national Disability Policy Seminar will be at the Renaissance Hotel, Washington, DC. Every year we attend the conference to learn about current national IDD public policy and visit our members of Congress following the conference. To view last year’s conference information click here.
March 26, 27, 28, 2017
The 10th Annual Developmental Disabilities Public Policy Conference, Hosted by The Arc and UCP California Collaboration at the Holiday Inn Capitol Plaza Hotel, 300 J Street, Sacramento, CA 95814. Every year we sponsor this IDD Public Policy conference to learn about current state policies impacting our community and advocates visit their representatives in the California Assembly and Senate. To watch last year’s conference click here.
…Recently Released Reports, Studies, etc.
STATE OF THE SCIENCE CONFERENCE
Free registration for the 2017 State of the Science Conference is now open! The conference will be held on February 13, 2017, at the National Academy of Sciences Building in Washington, DC. It is being hosted by the Rehabilitation Research and Training Center on Disability Statistics and Demographics (StatsRRTC). The conference’s theme is Disability Statistics: Lessons in Data Collection and Application to Policy and Practice. It is meant to bring together scientists, administrators, and staff from disability programs, and leaders from the disability policy and advocacy communities to discuss the state of disability statistics and how to move the field forward.
News Articles
California's top court says public may see government's legal bills
Los Angeles Times December 29, 2016
By Justice Mariano-Florentino Cuellar
(The Arc California Comment: attorneys for people with IDD are following this closely).
A government agency’s legal bills for a case that has been resolved are generally public record, a divided California Supreme Court ruled Thursday. The 4-3 decision reflected tensions between California laws that give the public broad access to government information and historic legal protections for confidential communications between lawyers and their clients.“Invoices for legal services are generally not communicated for the purpose of legal consultation,” Justice Mariano-Florentino Cuellar wrote for the majority. “Rather, they are communicated for the purpose of billing the client.“And, to the extent they have no other purpose or effect, they fall outside the scope of an attorney’s professional representation,” said Cuellar, who was appointed to the court by Gov. Jerry Brown.