MONDAY MORNING MEMO
News, Information, & Opportunities for California's Intellectual & Developmental Disability Community
May 1, 2017


IN THIS MEMO:
  • Big Turnout for Capitol Rally, $500M for Community Services
  • NEW!!! Cutting Through The Fog, A Self-Advocacy Column 
  • Mayday! Mayday! Mayday! Call Congress and Say NO to American Health Care Act
  • AB 959, Fighting Unjust Disparity for Non-White Children with I/DD 
  • National Stroke Awareness Month: Unique Needs of People with I/DD
  • Share Your Medicaid Story!  
  • The Arc US, Call For Proposals for National Convention
  • New Reports & Studies Related to Intellectual & Developmental Disabilities.
  • Jobs, Funding Opportunities, & More

The Arc California's incoming President, Betsy Katz, speaks about the importance of retaining funding for community services to a large crowd at the state Capitol on Wednesday.

 
 
FUNDING FOR COMMUNITY SERVICES
We Showed Up In Numbers!  
 
This last Wednesday, April 26th, the Arc of California, along with our community partners, showed up in force at the Capitol for a rally aimed at retaining money for community services.  The issue being discussed was a proposal put forward by Assemblyman Devon Mathis (R - Visalia) which would require the state to use money saved from the closure of developmental centers for the benefit of community services, instead of simply going to the state's general fund.

Speakers at the rally included many parent advocates and self-advocates.  Several legislators were also in attendance and spoke in favor of the proposal, including:
Assemblyman Devon Mathis
Assemblyman Chad Mayes
Assemblyman Tom Lackey
Assemblyman Dante Acosta
Assemblyman Kevin Kiley
Assemblyman Frank Bigelow

Executive Director for The Arc of California, Jordan Lindsey, kicked off the rally summarizing the importance of this issue and the need for the additional funding (watch below).
Jordan Lindsey, Executive Director of The Arc of California, kicks off the Capitol rally for the developmental disability community.
Jordan Lindsey, Executive Director of The Arc of California, kicks off the Capitol rally for the developmental disability community.

LANTERMAN COALITION OPPOSES AMERICAN HEALTH CARE ACT
Letter Sent To California Congressional Delegation

The Lanterman Coalition, consisting of 24 statewide organizations representing Californians with intellectual and developmental disabilities, opposes the American Health Care Act.  To view the letter The Arc and other coalition members signed on to, click here.
CUTTING THROUGH THE FOG
A self-advocacy column by Eric Gmeinder

What Are We Waiting For?
Guest Writer,
Eric Gmeinder

Today, the suppression of disadvantaged groups in the Western world invites laments like, "Can you believe people used to treat them like that?" Someday they'll say the same thing about people with intellectual disabilities.

And the reason they don't already is that, although many people are tolerant of disabled individuals, they're not aware of the struggles we go through. All that many of them know they learned from Hollywood. Some people with disabilities may always have the abilities of a two-year-old; others are impossible to tell apart from other adults, and the vast majority fall somewhere in between.

I have high-functioning autism, and my story is a typical one for people at my level. I can type up to eighty words per minute, write brilliant classical music, and am like a walking, talking almanac of historical facts. I don't have a community college certificate and minimal work experience because I'm lazy or stupid; I don't have them because of my struggles with anger and agoraphobia, and those were so bad that I'm lucky to have even as much as experience as I do.

But that didn't matter back when I was job hunting and my agency asked me to apply against people with more experience. Whether they meant to or not, employers punished me for something I couldn't help. On the occasions I was called in for an interview, I was sometimes asked about it. I dared not mention any disabilities, because the Americans with Disabilities Act, which is supposed to grant us civil rights protections, doesn't exist in practice. But my inability to behave perfectly during the interview probably gave them away just the same.

Now I am attending Futures Explored Practical Film & Media Workshop, a film and media training program for young adults with disabilities. One of the projects I am currently involved in is a short documentary about "autism as a natural state vs. autism as a disease." As I work my way into the independent film scene, I'm keeping a list of issues to which to commit myself, and this is certainly one of them.

Another reason that people don't feel as sorry for us as they do for other groups is that we've never had a large activist movement. They all began with an inciting act of disobedience like Rosa Parks or the Stonewall Riots. Exactly which corresponding event in the disabled community would happen is unclear, but it should happen soon-and the neurotypical world needs it more than it knows.


THE ARC UCP CALIFORNIA COLLABORATION
Public Policy Report

Fighting The Unequal Treatment of Non-White Children in the Community Developmental Services System
Greg deGiere,
Director of Public Policy

California in recent years has become aware of the unjust disparities in resources and services allocated to minority children with intellectual and other developmental disabilities. 

As of 2012, white consumers received an average of $15,817 in services through regional centers, while African American consumers received $12,270 and Latino consumers received $7,247. According to an Assembly Human Services Committee analysis, that hasn't changed much in five years.

These disparities came to light in a 2011 Los Angeles Times series that found parents whose children receive better services are wealthier, more sophisticated in navigating bureaucratic systems, and more fluent in English.  Parents who worked multiple jobs, single parents, immigrants, those who could not speak English, and those with multiple children were less
able to access services.

We've supported successful bills over the last few years to have the state step up to its responsibility for eliminating these disparities. 

This year, we're supporting Assembly Bill 959 by Assemblymember Chris Holden. If enacted, the bill will require a regional center to post additional information on its Web site and increases consumer access to vendors who are vendorized by a regional center outside the consumer's regional center catchment area.
Specifically, AB 959 will require each regional center to post a list of services provided by the regional center or through community community-based service providers such as Arc chapters and UCP affiliates. The Web posting will use a statewide format and be updated at least quarterly. 

The bill also will prohibit a regional center from denying a
consumer access to a provider that is vendorized by a regional center based solely on the fact that the provider is not vendorized by the regional center in the consumer's catchment area.

Assemblymember Holden intends the bill to ensure that every consumer has access to quality and specific services. Making a standardized list of provider services will empower consumers by knowing what services they offer and allowing them to advocate for a service where they believe their child would benefit. Placing this information in a prominent location and in plain language that is understandable will enable parents to become more informed and engaged before and after the IPP meetings. The more a parent can understand the service
s being offered to their child, the more they can navigate the information to ensure the best opportunities for their child. 

The bill will also make sure the consumer is not denied access to certain providers because of an individual regional cent
er policy to refuse a consumer access to a provider based solely on its geographic location. For example, if a family moves and a parent seeks to remain with their current service provider who is outside the catchment area of their new regional center, they should be able to have access to that service provider for their quality and continuum of care.

AB 959 passed the Assembly Human Services Committee 7-0 and is headed for what is always an uncertain fate in the Assembly Appropriations Committee.

Greg DeGiere
Public Policy Director


ADVOCACY & COMMUNITY ORGANIZING
Tim Hornbecker, Director of Advocacy and Community Organizing
 
May Day! or Mayday!

When I was a kid, I only knew
May Day as a spring festival, with a traditional May Pole where children grabbed ribbons from the pole, singing and dancing as they went around in a circle! It was originally an ancient pagan celebration marking the beginning of summer. Growing up Irish Catholic on my mother's side of the family, these Gaelic traditions were blended into songs about Mary, Jesus' mother, with homemade shoebox shrines and statues of Mary with flower wreathes.

Little did I think that later in my life as a community organizer,  I would learn that May 1st is also a major holiday celebrating labor around the world, but starting in this country in 1886. At that time, the labor movements were advocating for fair wages and especially an 8 hour work day. In Chicago, 40,000 people went on strike that first May Day, a day chosen to commemorate the killing of four people at a peaceful protest the year before! But that was the tip of the iceberg! Over 300,000 workers in 13,000 businesses in the US walked off their jobs in protest on that First International Workers' Day.  We owe so much to those early organizers, from child labor laws to 40 hour work weeks with sick leave and healthcare! Yes, I said Healthcare!!

Now that's what I call responding to an ACTION ALERT!  Yet here we are on May 1st, 2017, and The Arc of the United States and California are asking you to protest even more actively in order to save the dismantling of our Medicaid (Medi-Cal in CA) healthcare system that has just been expanded to cover even more of our families and their children with intellectual and developmental disabilities. Cutting Medicaid in order to pay for the repeal and replacement of the ACA with the AHCA is unconscionable! The President and legislators must do better than what was proposed last week. Thanks to your phone calls, moderate politicians were not willing to provide the votes necessary for passage. But that could change this week! Please, you still need to contact your elected officials in DC and tell them to "Just Say No!" 

"Mayday!" Although this distress call originates from the French "m'aidez" and has nothing to do with May Day, I am asking you today and all week to shout out "Mayday!Mayday!Mayday" (always said 3 times in a row) to legislators to stop healthcare and Medicaid from sinking!

Find your member of Congress here, http://www.house.gov/representatives/find/


Tim Hornbecker tim@thearcca.org 
Director of Advocacy and Community Organizing
The Arc California

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Teresa Anderson, Prevention Coordinator
HEALTH & WELLNESS ACTIVITIES

May is National Stroke Awareness Month: 
Unique Needs of People with I/DD
Teresa Anderson, MPH 

High blood pressure, diabetes and heart disease are among the leading risk factors for stroke. High blood pressure is the single greatest modifiable cause of stroke, which is often described as the brain equivalent of a heart attack. Research shows high blood pressure affects nearly 30% of U.S. adults without disabilities but increases significantly for adults with intellectual and developmental disabilities (I/DD) (approximately 37% for people with I/DD and 40% for those with mobility limitations).  Of even greater concern is the evidence that suggests nearly half of the people that have high blood pressure are undiagnosed and do not know they have it.

Recognizing the signs of stroke is critical to getting timely care, reducing brain damage and improving outcomes.  Some basic warning signs of stroke include; any sudden weakness or numbness (face or limb and specifically on one side of the body), sudden severe headache (no discernable cause), sudden onset confusion, unable to talk or speech is unclear, inability to understand what is being said, sudden vision changes, trouble walking, maintaining balance or dizziness.  However, reading the warning signs you can see how challenging it could be to determine if someone with I/DD is experiencing a stroke, as many of the signs are common for people with I/DD.  For example a person with cerebral palsy is likely to have trouble walking or maintaining balance as well as have difficulty with speech.  Communication and mobility challenges for many people with I/DD make it hard to recognize many of the warning signs or assess a person using a standard, simple, medically approved method known as smile, talk, raise (STR).

Unfortunately, there is not an easy answer or specific checklist that is universal to recognizing stroke symptoms in people with I/DD.  People with I/DD have unique and individual heath care needs and often their health depends on those close to them recognizing subtle changes. Especially important is routine blood pressure screening so any changes can be caught early and individual health/lifestyle modifications can be made. It is also important to talk with your health care provider to discuss concerns, risk factors, signs and symptoms that may be uniquely individual and information that can be shared with family, friends, employers, providers, etc. For more information about stroke prevention and treatment visit the following resources:


Teresa Anderson, MPH
The Arc California
Prevention Coordinator
teresa@thearcca.org
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The fight is not over and we need your help. 

Members of Congress are still considering repeal of the Affordable Care Act (ACA) with significant cuts to the Medicaid program. The most effective way to get your message across is to share your story about the importance of the ACA and why Medicaid matters to you. Telling your story will help personalize the issue and is an effective way to protect Medicaid.

Why should we in California care?

*For many adults with developmental disabilities, Medicaid is their health insurance. It pays for care from doctors, specialists, and hospitals, as well as prescriptions.

*California, like all states, receives Medicaid funding to help pay for the cost of long-term supports that people with developmental disabilities receive. If you or someone you know receives services paid for by a Regional Center, Medicaid most likely helps pay for it. Medicaid currently pays approximately half the cost of many community services through Regional Centers.

Thousands of Californians with developmental disabilities depend on Medicaid - or will need it in the future - to remain healthy, live in the community, and stay out of costly institutions. Many other groups of people will also be affected.
 
If this current approach passes, Medicaid in California would be significantly impacted.

It is important to share your story of Why Medicaid Matters to You.

What you can do: TELL YOUR STORY

Your Congressional Representatives and Senators need to know the impact Medicaid has on people's lives - and they need to know now. They know that Medicaid provides health coverage but may not realize all the other things Medicaid does, like funding In-Home Support Services (IHSS). 

If you or someone you know relies on Medicaid-paid services as described above -- or will in the future -- take these two easy steps:

1. Think about "Why Medicaid Matters to Me."

2. Share your story here -- briefly tell us the positive impact healthcare services and community supports have had on your life or the life of someone you care about. For example, how have Regional Center services helped you stay healthy, get or keep a job, live on your own, or do the things you want. 

Check out this video from the National Association of Councils on Developmental Disabilities explaining why it's important to share your story.


 
CALL FOR PROPOSALS, 
Arc NATIONAL CONVENTION

The Arc's 2017 National Convention
San Diego, California | November 1 - 4, 2017

Innovate | Motivate | Collaborate

Thank you for your interest in presenting at The Arc's 2017 National Convention.
 
This year's convention will be held at theSheraton San Diego Hotel & Marinaa 
in San Diego, CA on November 1-4, 2017. 

People with disabilities, their families, chapters of The Arc staff and volunteers, and others in our field and the business community need innovative solutions that will fuel our motivation and spark our spirit for collaboration. We are looking for knowledgeable, experienced presenters with: 
  • Expertise in critical issues important to people with intellectual/developmental disabilities (I/DD) and their families.
  • Experiences in fields and environments outside the disability community that highlight light novel perspectives and strategies that may translate.
  • A proven track record of presenting at national/international meetings in an engaging and interactive manner.
  • The ability to deliver information to a diverse audience including people with I/DD, families, professionals, business leaders and members of boards of directors.
If you have the passion to educate and energize the over 700 individuals who enthusiastically carry out our mission and values every day we invite you to submit a proposal to speak at The Arc's National Convention. 

Don't delay - all proposals must be submitted no later than 
11:59 p.m. EST on Friday, April 21, 2017.

To begin, either create a new account or login below if you already have an account. You may return to your submission page to make changes until the deadline for the call closes on Friday, April 21st at 11:59 pm EST. 

If you have any questions, please contact Kerry Mauger at mauger@thearc.org. The Arc will contact you by May 22nd to inform you about the status of your submission. 

Click here for proposal submission guidelines.

SIGN UP FOR OUR CALIFORNIA ACTION ALERTS
SIGN UP FOR OUR NATIONAL ACTION ALERTS
  

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UPCOMING EVENTS

July 30-August 5th
Angela Center, Santa Rosa
Gamaliel Leadership Training
Teaching ordinary citizens to unleash the power within themselves 
Phone: 312-357-2639 E-mail: 
info@gamaliel.org 
Web: www.gamaliel.org 



October 5-6, 2017
31st Annual Supported Life Conference
"Designing Dreams: Blueprint for a Meaningful Life"
Crowne Plaza Sacramento Northeast
 
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RECENTLY RELEASED REPORTS, STUDIES, ETC.

Covered California - Effect on Premiums, Enrollment and Coverage in 2018

Center for Health Care Strategies

Avalre Models Medicaid Per Capita Cap on Duals
New analysis by Avalere Health shows sensitivity of Medicaid per capita cap proposals on dual eligible beneficiaries, with the risk of shifting costs to Medicare.


http://calbudgetcenter.org/blog/president-trumps-child-care-proposal-benefits-struggling-families/


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FUNDING OPPORTUNITIES



By the Center for Business Innovative Research (CBIR)


The following grant opportunity postings were made on the Grants.gov Find Opportunities service:

California Achieving a Better Life Experience (ABLE) Act Board for People with Disabilities is now seeking Investment Consultant Services. All interested in responding to this Request for Proposals ("RFP") may find it on the Cal E-Procure website. Please search for the RFP using Event IE: 4330.


HHS - Department of Health and Human Services Office of the Assistant Secretary for Health FY17 Partnerships to Achieve Health Equity Synopsis 1 http://www.grants.gov/web/grants/view-opportunity.html?oppId=289362
 
USDOJ - Department of Justice Office on Violence Against Women OVW FY 2017 Transitional Housing Assistance Grants for Victims of Sexual Assault, Domestic Violence, Dating Violence and Stalking Synopsis 1 http://www.grants.gov/web/grants/view-opportunity.html?oppId=290960
 
HHS - Department of Health and Human Services Substance Abuse and Mental Health Services Adminis Grants to Expand Substance Abuse Treatment Capacity in Family treatment Drug Courts [Short Title:  Family Treatment Drug Courts (FTDCs)] Synopsis 1
 
HHS - Department of Health and Human Services Health Resources and Services Administration Area Health Education Centers Program Synopsis 1 http://www.grants.gov/web/grants/view-opportunity.html?oppId=289066
 
HHS - Department of Health and Human Services Office of the Assistant Secretary for Health FY17 Announcement of Anticipated Availability of Funds for Embryo Donation and/or Adoption Grant Synopsis 1 http://www.grants.gov/web/grants/view-opportunity.html?oppId=289300
 
EPA - Environmental Protection Agency FY17 ENVIRONMENTAL WORKFORCE DEVELOPMENT AND JOB TRAINING (EWDJT) GRANTS Synopsis 1 http://www.grants.gov/web/grants/view-opportunity.html?oppId=290955
 
HHS - Department of Health and Human Services Office of the Assistant Secretary for Health FY17 Announcement of Anticipated Availability of Funds for Safety Research of Currently Recommended Immunizations in the United States and Other Vaccine Prototypes Synopsis 1 http://www.grants.gov/web/grants/view-opportunity.html?oppId=288893
 
HHS - Department of Health and Human Services Health Resources and Services Administration Maternal and Child Environmental Health Collaborative Improvement and Innovation Network (CoIIN) Synopsis 3 http://www.grants.gov/web/grants/view-opportunity.html?oppId=289694

 
 


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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

A job portal custom-designed for people on the autism spectrum. This portal is free for the autism community and developed in partnership between Autism Speaks and Rangam Consultants Inc.

The Legislative Director position is based in Sacramento and is part of the team responsible for DRC's legislative activities in California. The position reports to the Advocacy Director. The Legislative Director provides overall direction to DRC's public policy activities with the goal of increasing DRC's legislative presence.  The position supervises legislative advocates.


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.

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